A STUDY OF FEDERAL HIV/AIDS ADVOCACY. At the. Crossroads. By Derek Hodel

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1 A STUDY OF FEDERAL HIV/AIDS ADVOCACY At the Crossroads By Derek Hodel2 At the Crossroads3 At the Crossroads A STUDY OF...

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AT THE CROSSROADS

A STUDY OF FEDERAL HIV/AIDS ADVOCACY

A Study of Federal HIV/AIDS Advocacy

At the

Crossroads By Derek Hodel

At the Crossroads

At the Crossroads A STUDY OF FEDERAL HIV/AIDS ADVOCACY By Derek Hodel

May 2004

CONTENTS Introduction EXECUTIVE SUMMARY

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INTRODUCTION

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BACKGROUND: FEDERAL HIV PUBLIC POLICY ADVOCACY

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PHASE I METHOD

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PHASE I FINDINGS

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Media review

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Primary Interviews

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PHASE I DISCUSSION

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PHASE II INTRODUCTION

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PHASE II METHOD

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PHASE II FINDINGS

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Background: The 106th Congress

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The 107th Congress – 1st Session

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The 107th Congress – 2nd Session

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The 108th Congress

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PHASE II DISCUSSION

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CONCLUSION

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APPENDIX

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Media Citations: Federal Policy (Table 3)

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Media Issues: Summary (Table 4)

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Media Citations: International Issues (detail) (Table 5)

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Media Citations: Domestic Issues (detail – part 1) (Table 6)

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Media Citations: Domestic Issues (detail – part 2) (Table 7)

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Media Coverage (Table 8)

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Policy Issues Priorities: International (Table 9)

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CONTENTS (continued) Policy Issues Priorities: Domestic (Table 10)

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Gaps in HIV Advocacy (Table 11)

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Chronology of Events: Global AIDS Initiative

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Interviews

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Acronyms

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TABLES AND FIGURES Figures 1 & 2

Policy-Related Media Citations Figure 3

Federal Policy-Related Media Citations Figure 4

Federal Policy Citations (2001-2002) Figure 5

Domestic Citations Figure 6

International Citations Figure 7

Breadth and Intensity of Media Coverage Figure 8

2002 Organization/Policy Budget

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Table 1

HIV Policy Advocacy (Resources and Commitment to Federal Issues) Table 2

Policy Advocacy Functional Capacity

Figure 9

Priority Issues by Organization Figure 10

Priority International Issues Cited by All Organizations Figure 11

Priority Domestic Issues Cited by All Organizations Figure 12

Critical Gaps in HIV Advocacy Capacity

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16 17 19 19

About the author: Derek Hodel is an independent consultant specializing in management, communications, and public policy in the nonprofit and public sectors. A substantial proportion of his practice focuses on HIV disease. Previously, Mr. Hodel was Director of Public Policy at Gay Men’s Health Crisis (New York City), Treatment and Research Director at AIDS Action Council (Washington, D.C.), and Executive Director at the PWA Health Group (New York City). In addition to the Ford Foundation, Mr. Hodel’s recent clients include Funders Concerned About AIDS, the Levi Strauss Foundation, the New York Academy of Medicine, and the New York City Department of Health and Mental Hygiene’s HIV Epidemiology, HIV Prevention, and Ryan White Care Services programs.

INTRODUCTION In early 2000, with the run-up to the presidential election, it became clear to many that the HIV/AIDS policy and advocacy movement was surprisingly subdued in articulating and demanding a national debate on a comprehensive HIV/AIDS policy agenda. Through its uncharacteristic silence, it seemed as if the movement had somehow lost focus and potency. After the change in administration, it became even clearer that those “on the inside” who had been shaping federal policy under the Clinton administration were now “on the outside” looking politically neutered, openly harassed, and definitely marginalized in their ability to inform and shape the new Bush administration’s HIV/AIDS policies. Since the advent of the HIV/AIDS pandemic in 1981, we have witnessed a small but vocal social movement – advocating for a just and proper response – evolve into a panoply of formidable policy and advocacy institutions. For many years, the politics of AIDS was one based in opposition to a federal government in denial and resistant to addressing the gravity of the epidemic. It was responsible for creating critically important and eventually, moderately well funded institutions advocating on behalf of constituents living with HIV/AIDS. The HIV/AIDS policy and advocacy world that we now see in Washington, D.C. is a testament to the fortitude, vision, and determination of many dynamic men and women over the years who didn’t take ‘no’ for an answer and persisted in moving a mountain of resistance. But the policy and advocacy world of 2003 is very different than 20 or even 10 years ago. In the beginning, our government was silent and our president wouldn’t even mention the epidemic until 1986. The number of people infected and dying rose at a precipitous and alarming rate. We watched our friends and families die while the government did and cared little for their suffering. Today the government spends more than $18 billion annually supporting a wide range of programs in research, prevention, treatment, and care both domestically and internationally. Still a far cry short of meeting community needs, these dollars and the programs they support did not materialize without much hard work by advocates who delivered the factual evidence, analyzed problems, offered realistic and cost-effective solutions, and demanded action. In a very real sense, advocates saved lives. They have been responsible for expanding people’s access to life-saving medications both domestically and internationally. They did then and continue now to promote sound prevention and treatment programs when the federal government wants to impose ideological and divisive agendas. The purpose of this report is to take a qualitative look at the current federal HIV policy and advocacy landscape in order to understand our strengths, acknowledge our challenges, and envision future alternatives for the betterment of, by, and for people living with HIV/AIDS. Unfortunately, AIDS will be with us for many years to come. Issues will rise and wane; institutions and individuals will come and go; only change is the constant feature that we can count on in our common struggle to end the epidemic. Politics and AIDS is an incredibly dynamic field where the key to our success will find itself in our ability to adapt and be flexible.

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The report that follows, At the Crossroads: A Study of Federal HIV/AIDS Advocacy, was researched and written by Mr. Derek Hodel in 2003. It covers a two-year period from January 1, 2001 to December 31, 2002. A longtime public health specialist and HIV/AIDS activist, Mr. Hodel developed a two-phased method for capturing an objective snapshot of the organizations working to affect federal HIV/AIDS policy. In Phase I, he conducts a media analysis examining the amount and type of media coverage organizations registered over a two-year period. These data are supplemented by interviews with key informants from the organizations analyzed. In Phase II, Mr. Hodel walks us through a case study charting the evolution of the “Global AIDS Initiative” to its legislative culmination in the bill HR1298, The United States Leadership Against HIV/AIDS Tuberculosis and Malaria Act of 2003 in the 108th Congress. While all studies have their limitations, the findings of this one are particularly important as a documentation of what is and a possible road map of what could be. It is also unique in its approach to analyzing the impact of policy and advocacy institutions where there are few methodological examples from which to draw. David Winters Ford Foundation

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EXECUTIVE SUMMARY BACKGROUND The AIDS epidemic has had a profound impact on the federal government. In 2003 the U.S. spent $16.8 billion dollars on AIDS. Approximately half of these expenditures were for HIV/AIDS programs, while half were disbursed through non-HIV/AIDS-specific entitlement programs such as Medicaid. There are now HIV/AIDS-specific programs in virtually every Department of the federal government. Still other legislative initiatives (e.g. the Americans with Disabilities Act) protect the civil liberties and other interests of people with AIDS. The AIDS epidemic has also witnessed the evolution of a potent federal HIV advocacy movement comprising many different types of organizations and activities. By the 2000s, however, there emerged a growing sense that the HIV advocacy movement was in decline. The purpose of this report is to describe the current federal HIV advocacy landscape, and more specifically, to identify how policymakers (both in Congress and the administration) are influenced. In order to map this world of advocacy, a two part methodology was used. Phase I employed an analysis of media articles to establish policy issues and identify key players, and primary interviews to describe policy priorities, advocacy capacity, and advocacy resources of key HIV advocacy organizations, during 2001-2002. Phase II examined the evolution of the United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003 (the “Global AIDS Bill”) as a case study. Below is a highlight of and discussions about their key findings with a summary conclusion.

PHASE I METHOD Media searches were conducted using 32 organizations (the initial sample) as the search criterion against two large, HIV-specific news databases: the Kaiser Family Foundation Daily HIV/AIDS Report and the National Prevention Information Network database, operated by the Centers for Disease Control and Prevention (CDC). For each citation retrieved, the database record was read and coded for content, and counts were recorded for federal and non-federal HIV policy citations. There are several limitations to this analysis, most importantly: 1) not all issues attract media attention; 2) media can sometimes distort the importance of issues; 3) media advocacy may be the only activity undertaken by an organization; and 4) conversely, an effective advocacy strategy may entail avoiding media exposure. To reduce the size of the cohort for purposes of conducting in-depth interviews, overall citations for each organization were analyzed and scored for breadth and intensity of coverage. Documents relating to federal HIV policy issues published by each organization during the study period were also collected and reviewed. A structured interview was used to obtain information related to HIV

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policy focus, staff, resources, organizational structure and budget; planning; constituents; collaboration; and HIV policy priorities during the study period.

PHASE I FINDINGS MEDIA REVIEW

A total of 742 media database records were reviewed. Organizations were relatively visible in the media (median = 19.5 citations), though total number of citations per organization varied dramatically (range 0-79). For nearly three-quarters of organizations, a majority of citations (median = 69%) – and for 10 organizations, all citations – reflected federal, as opposed to state or local issues, suggesting a strong system-wide commitment to federal HIV policy. But most organizations had citations related to a relatively narrow range of issues, suggesting strategic focus, or limited capacity, or both. Media citations were dominated by a relatively narrow range of issues. Among all federal HIV media citations, the majority (63%) reflected domestic concerns: 1) 29% concerned general awareness (of which 59% concerned specific subpopulations); 2) 23% concerned HIV prevention issues, of which 30% related to “prevention defense” (i.e. defensive advocacy in response to federal audits of HIV prevention programs, reports of wasteful HIV prevention spending, accusations of inappropriately sexually explicit HIV prevention messages, etc); and 3) 19% concerned funding for HIV programs, of which 35% referred to the impact of the 9/11 terrorist attacks on AIDS funding, while 27% referred to funding for a single program: the AIDS Drug Assistance Program (ADAP). Certain issues that dominated the press in previous years were practically absent: civil liberties and criminal justice or prison issues. There also were no citations related to school-based HIV education or substance abuse issues. International issues comprised 37% of all federal HIV policy citations – 60% were associated with only three organizations, while 48% were related to funding. PRIMARY INTERVIEWS

Eighteen interviews were conducted with HIV advocacy organizations. Agency budgets ranged from $32,500 to $80 million (median $2.35 million). Two-thirds of agencies reported receiving government funding, ranging from 10%-93% of their total budget. While the focus on federal issues tended to be higher among national organizations, in general overall capacity and resources dedicated to federal advocacy were higher among regional service providers. Functionally, organizations reported activities within four overall categories: 1) advocacy, policy analysis, and policy development; 2) capacity building and community development; 3) grassroots organizing; and 4) civil disobedience or protest. While effective policy advocacy likely requires all four functions, as would be expected, no organizations reported the capacity to engage in all four. Most organizations designated very few issues as high priorities with 78% of organizations reporting one or more domestic and 39% reporting one or more international issue. (Three organizations

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named only international issues among their high priorities.) But among issues they did name as a high priority, 44% of organizations included proprietary appropriations, with average intensity of effort very high. Two other issues were frequently named, though not as high priorities: Medicaid and “prevention defense,” both with substantially lower intensity of effort. Informants suggested that prevention defense was an example of an issue to which agencies felt compelled to respond. But when asked to identify “critical gaps” in advocacy capacity (without regard to their own priorities), 47% named Medicaid and 42% named HIV prevention. Several historically important issues were neither identified as priorities nor as critical gaps: substance abuse, prison, mental health, poverty, civil liberties and HIV education. Organizations also conceptualized critical advocacy gaps in terms of strategic or functional capacity: one-third of organizations regarded the lack of coordinated, Washington-based HIV advocacy capacity as a critical gap.

PHASE II METHOD Relevant congressional and White House documents, as well as Phase I media analyses, were reviewed and used to construct a detailed chronology of events. Structured interviews were conducted among global AIDS advocates and others (congressional staffers, administration officials, and other individuals) who played roles in the development of the legislation.

PHASE II FINDINGS The Global AIDS Bill is perhaps the only example of major federal AIDS legislation to have been developed without the primary leadership of HIV organizations. Rather, in part because global AIDS programs have historically fallen under the rubric of international development or foreign aid, many traditional development organizations assumed leadership roles, most importantly the Global Health Council (GHC), but also DATA (Debt, AIDS, Trade for Africa) and others. When the global AIDS issue emerged, HIV organizations that were prepared, or who could get ready fast enough, participated in the debate. As a consequence, most domestic AIDS organizations were excluded. HIV organizations that did play strong supporting roles included: AIDS Healthcare Foundation (AHF); the Elizabeth Glaser Pediatric AIDS Foundation (PAF); the Global AIDS Alliance (GAA); Health GAP; and the San Francisco AIDS Foundation (SFAF). The Global AIDS Bill evolved through many iterations dating back to 1999, in the 106th Congress. What advocacy there was on early bills – international issues were not a priority for domestic AIDS organizations – was coordinated through the NORA International Issues Working Group (IIWG), co-chaired by GHC. Other members included SFAF and PAF. Passage of the Global AIDS and Tuberculosis Relief Act of 2000 (which combined many earlier bills) took advocates by surprise: “We realized at that point that we really had to pull ourselves together for the 107th Congress.”

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In June, 2001, U.S. Rep. Henry Hyde, R-Ill., introduced the Global Access to HIV/AIDS Prevention, Awareness, Education, and Treatment Act of 2001 (HR2069, aka the “Hyde Bill”), which authorized a contribution to what would ultimately become the Global Fund to Fight AIDS, Tuberculosis, and Malaria (the Global Fund) and included a $50 million pilot program to provide antiretroviral (ARV) treatments. Advocacy during the bill’s evolution fell into three camps: 1) traditional global AIDS advocates, represented by IIWG, who played an insider role and with whom many congressional staff were comfortable working; 2) Health GAP, Global AIDS Alliance and a coalition of progressive development organizations, who mostly played an outsider role and whose primary interests concerned funding for ARV treatments and a US contribution to the Global Fund; and 3) AHF, a wild card, whose primary interest concerned the provision of ARV treatments through traditional (USAID administered) mechanisms. Congressional staff solicited the insiders and tolerated the outsiders, though the outsiders’ advocacy clearly paid off. The HR2069 markup authorized $750 million for a US contribution to the Global Fund. AHF’s early advocacy also paid off. In the report, “the Administrator of USAID is urged to coordinate the provision of assistance with entities such as the AIDS Healthcare Foundation…” In the Senate, Senators John Kerry (D-Mass.) and Bill Frist (R-Tenn.) had announced that they would co-chair a bipartisan task force on HIV/AIDS convened through the Center for Strategic and International Studies (CSIS), and begin drafting what would ultimately become the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2002 (S2525), which authorized a $1 billion contribution to the Global Fund and $800 million for AIDS programs. Senators Frist and Edward Kennedy (D-Mass.) subsequently introduced a companion bill (S2649), which authorized Department of Health and Human Services agencies to operate internationally. During Senate consideration of HR2069, the two Senate bills were combined, substituted for the House bill in its entirety, and passed. As the 107th Congress concluded in December 2002, attempts to conference the bill ultimately failed due to what many advocates describe as partisan wrangling and White House indifference. As of June 2002, development of what would become the President’s Emergency Plan for AIDS Relief was also underway. Advocates again fell into insider and outsider roles. Insiders (including GHC and SFAF) attended meetings at the White House, while outsiders (including Health GAP and GAA) conducted street protests. A platform developed by outsiders, Saving Families and Communities: A Proposal for a US Presidential Global AIDS Initiative, signed by 77 organizations (but not AHF, GHG, PAF, or SFAF) called for providing ARV treatments to three million people by 2005 and a $2.5 million annual US contribution to the Global Fund. While administration officials claim that the president’s plan was developed without community input, both insider and outsider strategies, though poorly coordinated, were clearly influential. Most advocates, however, admit to being “completely shocked” by the president’s announcement of his plan during the 2003 State of the Union address, in which he proposed to spend $15 billion on global AIDS over five years, In March 2003, Rep. Hyde introduced HR1298, the United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003, which incorporated the president’s call for $15 billion for AIDS

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programs over five years. The bill included a far higher contribution ($1 billion) to the Global Fund than the White House favored, however. (The bill also included controversial spending targets for treatment, which Hyde’s staff say had been inserted at the behest of AHF.) Two months later, after rancorous debate in both the House and Senate, during which several of what advocates describe as noxious amendments were attached, the bill was passed and signed into law by President Bush.

DISCUSSION Although interviews reveal a sense of crisis among advocates – that a once vaunted HIV policy advocacy movement has become enfeebled – there are more HIV advocacy organizations now than ever before. But these organizations take on a relatively narrow range of issues, most in their selfinterest, the most important being funding. Advocacy organizations, however, are not wholly to blame; the importance of categorical funding in the context of our health care system cannot be overstated and their constituencies demand a focus on money to support local programs. Morever, that there is now federal funding supporting HIV programs is the direct result of past successful advocacy: “…everybody ended up with their own constituency group, all advocating for their own funding streams, and fairly successfully.” Organizations have also developed expertise in the administration of federal programs. As a consequence, these programs are relatively well funded and administered, but the maintenance of effort to sustain them detracts from other priorities. In spite of the advantages it confers, specialization also forces agencies to respond to emerging issues on the fly, distracting from their planned agendas. It also precludes a broader perspective and short-circuits debate on systemic programmatic reform, the Ryan White program being the most obvious example. Specialization also leaves by the wayside constituencies without a categorical program to their name (e.g. Medicaid recipients, people at risk for HIV infection) and issues of primary concern to the poor (i.e. welfare reform) or severely marginalized (i.e. substance abuse, mental illness, prisons). Finally, specialized advocacy doesn’t only ignore other programs: it sometimes diminishes them. During the 2000 Ryan White CARE Act reauthorization, “formula fights” fractured the advocacy community and may have permanently disabled the AIDS Action Council (AAC). Evidence to support the theory that a growing dependence on federal funding has neutered HIV policy advocacy is shaky and obscures a more fundamental problem: funding for policy advocacy – which can’t be paid for with government money – has spectacularly declined in recent years. In the past, more foundations supported policy analysis and development. Advocates recalled a time when AAC provided advocacy leadership, through three key functions: 1) it provided substantive, mostly uncompromised policy expertise; 2) it served as a forum for regional AIDS providers; and 3) it convened NORA, a broad coalition of mainstream organizations and, through its committees, a forum for Washington-based HIV organizations to collaborate. But AAC was always dependent on its partners – community based organizations (CBOs) that supported it and Washington-based agencies that it corralled – to actually do the public policy legwork.

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When support from its partners diminished, either in response to AAC’s political missteps or due to their unwillingness to compromise, the agency lost its credibility. At the time of this writing, the Federal AIDS Policy Partnership (FAPP), consisting of representatives from national and regional HIV organizations, had recently formed. FAPP members do develop policy positions, though not in the coalition’s name, a neutral posture maintained through an “opt-in, opt-out” decision-making process. The 2005 Ryan White reauthorization will likely provide FAPP’s first major test. The Bush administration, which has already reshaped HIV prevention programs along more conservative lines, has hinted at its intention to do the same with Ryan White CARE programs. Global AIDS programs have historically been considered in the context of international development. The success of the Global AIDS Initiative was dependent, in part, on breaking this paradigm, a possibility that emerged upon the advent of successful antiretroviral (ARV) treatments. Eventually, both ends of the political spectrum were persuaded of the possibility of providing ARV treatments and medical care to persons with AIDS in the developing world. Moreover, breaking paradigms effectively wipes the slate clean, which made possible a broad strokes advocacy campaign, as embodied by the GAA’s campaign: Donate the Dollars! Treat the People! Drop the Debt! But because the Global AIDS Initiative does represent such a shift in paradigm, it is not a perfect lens through which to view domestic AIDS advocacy, at least with respect to analysis and policy development. It does, however, provide lessons for advocacy strategy and tactics: • Policy advocacy is a process that requires a long-term strategy. Those groups that had longstanding relationships and experience with global AIDS issues had an early strategic advantage. • Every advocacy effort requires insiders and outsiders. All policy advocacy requires insiders, who can negotiate, broker compromises, and ultimately, cut a deal. But outsiders are also necessary, in order to raise expectations. With the Global AIDS Initiative, Health GAP’s claim to have “changed the realm of the possible” seems at least partly true. • You don’t have to be there, but you have to be there. SFAF and AHF both exerted significant influence, but only through repeated visits to Washington. • You can buy access. Both SFAF and AHF significantly increased their influence through the use of paid lobbyists. • And finally, all that’s required to play is to play. While groups with long experience in global AIDS issues clearly started with an advantage, many organizations jumped in and contributed to the debate.

CONCLUSION The “crisis” in HIV policy advocacy is related as much to will as to capacity. As a result of many years of community organizing and hard work, there exists a strong foundation of national HIV organizations, supported by an equally strong constituent base. What is lacking is the commitment

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on the part of stakeholders system wide to: 1) develop broad, cross-issue policy recommendations, critiques, and analyses, and 2) support and maintain a mechanism to permit (or persuade, or even compel) disparate, sometimes competing interests within the HIV community to collaborate and compromise. These deficiencies – the widely acknowledged “critical gaps” in HIV policy advocacy – are most pronounced with respect to the evolution of mature programs, such as the Ryan White CARE Act, or programs without vested stakeholders, such as entitlement programs or programs targeting disadvantaged populations, such as substance users, criminal justice populations, or the mentally ill. Funding is one problem – many early HIV policy initiatives were supported through foundation grants that financed a deliberative, and collaborative, policy development process – but not the only one. Washington organizations base their priorities upon the wishes of their constituents. If organizations that contribute to Washington-based HIV advocacy organizations favored a more broad-based approach, it would happen. That FAPP has yet to demonstrate the capacity for real policy development, compromise, or consensus building is hardly a surprise, given the so-far tentative commitment of its members. It’s not clear that the coalition’s participants are committed to supporting a new organization, which would require both the contribution of resources and a commitment to a collaborative decision-making process. Sadly, the real missing ingredient in the HIV policy advocacy mix is leadership, specifically the charismatic leadership necessary to corral stakeholders, inspire them to subscribe to a vision larger than their individual programs, negotiate compromises, and ultimately build (and enforce) consensus on difficult issues facing the community. But the HIV advocacy movement remains young. In the context of its relatively brief, twentyplus year history, its achievements are impressive indeed. But like other social movements before it, the HIV/AIDS movement has arrived at an important point in its own development, a crossroads in time that may shape the course of events in the next decade of AIDS. And, as the movement matures, HIV advocates may well learn from the histories and experiences of other social movements. With its impressive record, ability to attract the talent, track record for innovative public policy responses and broad network of powerful institutions supported by a strong constituency, the HIV community certainly has within its grasp the ability to right the situation. But until then, the state of HIV policy advocacy seems likely to remain in flux.

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INTRODUCTION

BACKGROUND: FEDERAL HIV PUBLIC POLICY ADVOCACY The AIDS epidemic has had a profound impact on the federal government. Twenty-plus years after its emergence in 1981, in 2003 the government spent $16.8 billion dollars on AIDS (still less than one percent of total federal spending) for prevention and education, services for people living with HIV/AIDS, biomedical and behavioral research, and international assistance. Approximately half of these expenditures are designated by law to be used for HIV/AIDS programs. Major HIV/AIDSspecific legislation includes the Ryan White CARE Act, the Housing Opportunities for People Living with AIDS Act, and the recently passed United States Leadership Against HIV/AIDS, Malaria and Tuberculosis Act of 2003. Other HIV/AIDS programs (e.g. HIV prevention programs supported by the Centers for Disease Control and Prevention [CDC], research supported by the National Institutes of Health [NIH], or HIV/AIDS care programs at the Departments of Defense or Veterans Affairs) are the result of legislative amendments to the underlying authorities of federal agencies, are specified through appropriations legislation, earmarks or report language, or have developed via administrative initiatives under existing legislative authority. There are now HIV/AIDS-specific programs in virtually every agency of the Department of Health and Human Services (HHS), including the Agency for Healthcare Research and Quality, CDC, the Food and Drug Administration, the Health Resources Services Administration [HRSA], the Indian Health Service, NIH, and the Substance Abuse and Mental Health Services Administration, as well as within every other department in the federal government, from the Department of Agriculture to the Department of Veterans Affairs, and many independent agencies (e.g. the Peace Corps, the United States Agency for International Development [USAID]. More than half of federal HIV/AIDS spending is disbursed through non-HIV/AIDS-specific entitlement programs operated by the Centers for Medicare and Medicaid Services or the Social Security Administration, which supports the Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) programs, all of which provide benefits or services based upon need without specific congressional appropriation of funds. Still other legislative initiatives (e.g. the Americans with Disabilities Act), while not providing direct services, protect the civil liberties and other interests of people with AIDS.

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The AIDS epidemic has witnessed the evolution of a potent federal HIV policy advocacy movement comprising many different types of organizations and activities.1 Early in the 1980s, people living with AIDS (the term was then novel) formed associations that later evolved into the National Association of People with AIDS (NAPWA); AIDS service providers formed networks (the Federation of AIDS Related Organizations in 1983, the National AIDS Network in 1985) that ultimately evolved into the AIDS Action Council (AAC); in 1987, the National Minority AIDS Council (NMAC) was formed. Also in 1987, the AIDS Coalition to Unleash Power (ACT UP) conducted its first demonstration on Wall Street in New York City. By the late 1980s, federal HIV policy advocacy was being undertaken by a sophisticated network of organizations across the country. In 1990, the landmark Ryan White CARE Act was signed into law by the first President Bush. The HIV/AIDS advocacy movement now comprises a variety of groups and organizations, including: • National membership organizations. Usually based in Washington, D.C., these organizations are most often supported in large part by organizational or individual members. Examples include the AAC, NMAC, and NAPWA. Some, but not all, also provide services under contract with the federal government. • AIDS service providers. Based primarily in large cities, these organizations, which typically provide a range of prevention and care services, sometimes also conduct HIV policy activities. In general, only the largest service providers can afford to engage in HIV policy advocacy at the federal level. Examples include Gay Men’s Health Crisis (GMHC) in New York, the San Francisco AIDS Foundation (SFAF), the AIDS Healthcare Foundation (AHF) in Los Angeles and Whitman Walker Clinic (WWC) in Washington, D.C. All provide services under contract with federal, state or local governments. • Academic research organizations. Typically situated within universities, academic centers frequently conduct scientific research under contract for the federal government, or less frequently, for private foundations. Examples include the AIDS Research Institute (ARI), which includes the Center for AIDS Prevention Studies and the Health Policy Institute at the University of California at San Francisco and the Center for Health Services Research and Policy at George Washington University. • Think tanks and foundations. Although some organizations actively advocate and others do not, depending on their organizational status and mission, many foundations and similar organizations

1 The words advocate and advocacy, and the phrases advocacy movement and advocacy organization are used throughout this document to refer to a range of activities – including civil disobedience, policy analysis, information dissemination, grassroots organizing, legislative lobbying – that are intended in some way to influence federal public policy. It is important to note that in some cases, laws and regulations restrict the degree to which certain organizations can engage in some of these activities. For example, many types of nonprofit organizations are prohibited from conducting more than limited legislative lobbying; conversely, there are almost no restrictions on the development, publication or distribution of information that does not explicitly endorse particular legislative initiatives, referenda, or candidates for office. As a consequence, many organizations very carefully tailor their activities to ensure compliance with relevant laws and regulations. While careful attention to the legal definition of and restrictions against advocacy and related activities is of utmost importance to these organizations, however, it is not important to the analysis in this document. Readers are cautioned against inferring from the use of the words advocate or advocacy, or the phrase advocacy organization, any particular characterization of persons, organizations, or activities vis-à-vis these restrictions.

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contribute to HIV policy advocacy efforts through the support of original research or the development of policy analyses (e.g. the American Foundation for AIDS Research [AMFAR] and the Henry J. Kaiser Family Foundation). • Constituent-based protest organizations. Exemplified by ACT UP, groups organized primarily around civil disobedience tend to be the most fluid, both in terms of focus and organizational structure. In general, such groups have neither official memberships nor staff. • Ad-hoc or formal coalitions. Often organized around a single issue or funding stream, coalitions (e.g. the National Organizations Responding to AIDS [NORA], Communities Advocating Emergency AIDS Relief (CAEAR) Coalition) typically comprise many organizations to leverage support on a particular topic. • Paid (contract or retainer) organizations. Paid lobbyists are a common feature of the Washington landscape, and in a few instances, such organizations are employed on behalf of HIV/AIDS organizations or interests. Principle examples include the Sheridan Group, longtime (but not current) representative of SFAF and the CAEAR Coalition. • Non-HIV-specific organizations. As HIV/AIDS programs have become well established, many longstanding Washington, D.C.-based advocacy organizations (including groups whose main focus is health, poverty, development, reproductive rights, civil liberties, etc.) maintain an active HIV/AIDS portfolio as part of their larger mission. Examples include the American Civil Liberties Union, the Global Health Council (GHC), and the Sexuality Information and Education Council for the United States (SIECUS). In many ways, HIV policy advocates have fundamentally altered the role of the “consumer” (a term that gained popularity in part as a result of constituent-driven HIV policy advocacy) in federal policy making, in turn affecting every aspect of the healthcare delivery system both domestically, from the doctor-patient relationship to the approval and regulation of drugs, to more recently abroad, through international trade and foreign aid. Based upon their successes, HIV policy advocates are widely regarded as a model for other disease groups. By the 2000s, however, there emerged a growing sense that the HIV advocacy movement was in decline, that it had somehow lost focus and had definitely lost potency. The media began to report on faltering national organizations, hobbled by what advocates called a “brain-drain.” The purpose of this report is to describe the current federal HIV policy advocacy landscape. The first part (Phase I) entails a broad examination of those organizations that conduct HIV policy advocacy, in an effort to understand: What are the issues? Who are the players? What is their capacity to conduct federal HIV policy advocacy? What resources are devoted to federal HIV policy advocacy? The second part (Phase II) consists of a more detailed case study of a single piece of legislation, both to illustrate the dynamics and relationships identified during Phase I, and to more specifically identify how policymakers (both in Congress and the administration) are influenced.

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PHASE I METHOD Phase I aims to broadly describe the HIV policy landscape through both subjective and objective methods, by: 1) identifying HIV policy issues that emerged during a given period (i.e. define the “need” for HIV policy advocacy); 2) describing HIV policy advocacy efforts made by various organizations during the same period (i.e. define the “capacity” of organizations to conduct HIV policy advocacy); and 3) determining the fit between the two (i.e. assessing the capacity of HIV policy advocacy organizations in relation to the need). Study period. A two-year study period (from January 1, 2001 to December 31, 2002) was selected

in order to capture issues that emerge less frequently than annually, while still circumscribing a finite period with a beginning and an end. This period also has the advantage of corresponding with an entire Congress (the 107th), and the first two years of the Bush administration. Media Analysis. The initial analysis of this phase entailed a review of media citations pertaining

to HIV policy issues during the two-year study period. The purpose of the analysis was three-fold: 1) to establish which HIV policy issues emerged during the study period; 2) to examine how these issues played out in the media; and 3) using media citations as a marker, to develop a preliminary understanding of which organizations conducted HIV policy advocacy on what issues. In part, this analysis was based upon the assumption that media exposure is one component of effective policy advocacy and vice versa; that groups that engage in effective HIV policy advocacy will therefore secure media exposure. There are several limitations to this analysis: 1) not all policy issues attract media attention; 2) media can sometimes distort the importance of policy issues or the extent of advocacy efforts by dint of disproportionate exposure; 3) in some cases, media advocacy may be the only policy activity undertaken by an organization; in these instances, media citations may over-represent policy advocacy; 4) in other cases, an effective advocacy strategy may entail avoiding media exposure; and 5) media exposure is often unsolicited – i.e. organizations are frequently contacted by the media for comment, whether or not they are actively engaged in any given issue. Initial Study Cohort. An initial study sample comprising 32 HIV-specific policy advocacy organ-

izations was developed based upon informal key informant interviews supplemented with online and published listings.2 The cohort included organizations ranging from volunteer associations (e.g. ACT UP/Philadelphia3) to large, well-established organizations with budgets in excess of $20 million (e.g. AHF, Elizabeth Glaser Pediatric AIDS Foundation [PAF], GMHC); both national and regional organizations were represented. Media Database Searches. Searches were conducted using each of the 32 organizations’ names

as the search criterion against two large, HIV-specific news databases: the Kaiser Family Foundation Daily HIV/AIDS Report and the National Prevention Information Network database, operated by 2 Non-HIV-specific organizations were not included – even those (e.g. Global Health Council) with large HIV portfolios. 3 Unless specifically indicated otherwise, all subsequent references to ACT UP refer to the Philadelphia chapter.

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FEDERAL HIV POLICY ADVOCACY PROJECT

CDC. Both databases were selected in favor of manual electronic searches (e.g. via Nexus or similar search engine) because of 1) their consistent and longstanding application of uniform criteria to select HIV-specific news articles from a wide variety of sources; and 2) the ability to conduct logical searches against archived database records. Discussions with both database providers suggested that algorithms used to select daily news articles had been highly refined over a period of years, and broadly speaking, mirrored the focus of this project (i.e. both had a strong focus on federal HIV public policy).4 A separate search was run against both databases for each organization, using broad search criteria designed to capture all possible permutations of an organization’s name (i.e. [“TAG” or “Treatment Action”] for Treatment Action Group). For each media citation, the relevant database record (including the full text of the article) was downloaded and retained. Data Analysis. For each media citation, the database record was read and coded for content as

follows: 1) federal HIV policy issue; 2) not federal HIV policy issue; 3) error in search strategy (e.g. “price tag” vs. TAG (Treatment Action Group) or “Zambia AIDS Action” vs. AIDS Action Council). Search errors were set-aside. Articles coded as federal HIV policy issues included those concerning pending federal legislation (including funding), congressional hearings, or announcements by members of Congress; federal care, treatment, prevention or other HIV programs; aspects of federal entitlement programs related to HIV; administration announcements, appointments, or program proposals; agency policies related to HIV program administration; and foreign policy related to HIV (including foreign trade). Articles coded as not federal HIV policy included those pertaining to state or local legislation or programs (including state or local budgets); organizational fundraising campaigns; organizational leadership or transitions; state or local surveillance or epidemiologic reports; state or local court cases; biomedical research results, including all HIV treatment studies, or the design of research protocols; business or commercial news (including new drug approvals); or human interest.5 Counts were recorded for federal HIV policy-related and non-federal HIV policy-related media citations for each organization. For each federal HIV policy-related citation, the database record was then read and coded for content using an issue grid divided into 19 broad policy categories (e.g. HIV funding, HIV prevention, HIV care, civil liberties, etc.), each of which was subdivided into specific issues. Because a number of unanticipated issues emerged during this process, the grid was revised upon the completion of the first reading. The entire reading and coding exercise was then repeated by a second reader using the revised issue grid. Selection of Smaller, Interview Cohort. To reduce the size of the original cohort to a more man-

ageable size (±20) for purposes of conducting in-depth interviews, overall citations for each organization were tallied and assessed for: 1) breadth of coverage, as represented by the number of broad policy categories for which each organization had media citations; and 2) intensity of coverage, as 4 Although the advantages to using proprietary databases were determined to outweigh the disadvantages, one key limitation of this approach should be noted: namely, because the inclusion of a particular media citation in either database is ultimately the result of a subjective (i.e. editorial) decision on the part of each database’s managers, both may be subject to editorial bias. 5 At the request of the sponsor, certain federal HIV policy issues were excluded: AIDS housing; HIV/AIDS surveillance; biomedical and behavioral research; labor, workplace and occupational safety; military, defense; and drug approval, regulation.

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Federal

Figure 1 Media Citations Total Number POLICY-RELATED MEDIA CITATIONS (n=742)

Non-Federal (State or Local)

represented by the average number of citations per policy category. Those organizations scoring above the 25th percentile in measures of both breadth and intensity of media coverage were included in the smaller interview cohort. Document review. Documents relating to federal HIV

policy issues that were published during the study period

41%

59%

were collected from each of the 32 organizations. For those organizations with websites, relevant documents were downloaded. Where the availability of additional materials was suggested on the website, in other publications or from other sources, follow-up phone calls were placed to individual agencies in order to secure additional documents. Documents

Federal

Non-Federal (State or Local)

were reviewed and used to inform the design of interview instruments (see below). Primary Interviews. Primary interviews were used to

gather more in-depth information from representatives for For nearly three-quarters of organizations, a majority of citations (median = 69%) – and for 10 organizations, all citations – reflected federal HIV policy issues, suggesting a strong commitment to federal HIV policy.

each organization in the interview cohort (n=18). A structured interview instrument was developed to obtain information related to HIV policy focus, staff, resources, organizational structure and budget; strategic planning process; constituent relationships; coalition and other collaboration activities; and HIV policy issue priorities during the study period. The instrument was pilot tested among three former HIV policy directors from major HIV policy advocacy organizations and refined to improve flow. In each case, an initial solicitation

was made to the executive director or chief executive officer requesting an in-person interview with him/her and/or appropriate public policy staff. During interviews, informants were prompted as necessary to refresh their memory, based upon information gleaned from media analysis or document review. All interviews were tape-recorded.

PHASE I FINDINGS MEDIA REVIEW

Media coverage of HIV policy issues as represented by Kaiser Daily HIV/AIDS Report and National Prevention Information Network database records during the period was modest. A total of 742

6 Each database record was reviewed for references to all 32 HIV policy organizations. Because some articles contained citations related to two or more organizations, the total number of articles reviewed is not unduplicated.

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FEDERAL HIV POLICY ADVOCACY PROJECT

records 6 that met search criteria were retrieved, reviewed and coded by policy category and issue. Overall, many organizations were relatively visible in the media (median = 19.5 citations during the two year study period). The number of citations attributed to each organization varied dramatically (range 0-79) however, and more than half of all citations (53%) could be attributed to only seven organizations, including Global AIDS Alliance (GAA), Health GAP (Global Access Project), and five regional service providers, AIDS Action Committee (Boston), AHF (Los Angeles), GMHC (New York), SFAF, and Whitman-Walker Clinic (Washington, D.C.). The focus on federal HIV policy issues was relatively strong overall. Among all citations, 59% (437) concerned federal HIV policy issues, with the number attributed to individual organizations again varying dramatically (range 0-41). Of those, more than half (52%) could be attributed to only eight organizations, including ACT UP, GAA, Health GAP, NAPWA, and four regional service providers, AHF, GMHC, SFAF, and WWC. When the proportion of overall media citations related to federal HIV policy issues was considered (range 7-100%) without regard to overall totals, for nearly three-quarters of organizations, a Figure 2 POLICY-RELATED MEDIA CITATIONS (n=742, Overallrange Media0-79) Citations by Organization ACT UP PHILADELPHIA ADAP WORKING GROUP AIDS ACTION COMMITTEE AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN,YOUTH AND FAMILIES AIDS FOUNDATION OF CHICAGO AIDS HEALTHCARE FOUNDATION AIDS PROJECT LOS ANGELES AIDS RESEARCH INSTITUTE AIDS TREATMENT AND DATA NETWORK AMERICAN FOUNDATION FOR AIDS RESEARCH BLACK AIDS INSTITUTE CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION FLORIDA AIDS ACTION GAY MEN’S HEALTH CRISIS GLOBAL AIDS ALLIANCE HARM REDUCTION COALITION HARVARD AIDS INSTITUTE HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP) HIV MEDICINE ASSOCIATION LIFELONG AIDS ALLIANCE NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS NATIONAL ASSOCIATION OF PEOPLE WITH AIDS NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS NATIONAL MINORITY AIDS COUNCIL NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER PROJECT INFORM SAN FRANCISCO AIDS FOUNDATION TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC

0

10 Federal

20

30

40

50

60

70

80

Non-Federal (State or Local)

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7

TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC

0

10 International Issues

Figure 3 FEDERAL POLICY-RELATED MEDIA CITATIONS 4 Total Number fed Media Citations (n=437)

20

30

40

Domestic Issues

majority of citations (median = 69%) – and for 10 organizations, all citations – reflected federal HIV policy issues, suggesting a strong commitment to federal HIV policy. But for many organizations, the overall number of citations was relatively small, suggesting only sporadic engagement in HIV policy issues generally. For example, of the 10 organizations for whom 100% of citations were related to federal HIV policy

63%

37%

issues, only four (ACT UP, Health GAP, GAA, and the National Alliance of State and Territorial AIDS Directors (NASTAD) had total HIV policy citations higher than the median (>12) for the entire group. Conversely, some organizations with many media citations had only a relatively small proportion related to fed-

International Issues

Domestic Issues

eral policy – e.g. while AIDS Action Committee (Boston) had 56 citations overall, only 7% related to federal policy – suggesting a strong focus on state or local issues. See Appendix, Table 3.

International issues comprised 37% of all federal HIV policy citations. Strikingly, 60% of these were associated with only three organizations (ACT UP, GAA, and Health GAP).

Among all federal HIV policy media citations, the majority (63%) reflected domestic concerns. While domestic issues covered in the media ran the gamut, the vast majority (nearly three-quarters) concerned one of three topics: 1) general awareness (29% of domestic citations), 2) HIV prevention issues (23%), or 3) funding for HIV programs (19%). Among general awareness citations, 59% concerned the

impact of the HIV epidemic on or the need for services among specific subpopulations, or populationspecific advocacy campaigns. Most entries in this category reflected concerns for African-American (18%) or MSM (men who have sex with men – 11%) populations. Notably, an emerging awareness of the impact of the HIV epidemic on Southern states was reflected in 11% of general awareness citations. The remaining 48% of general awareness articles focused on the continuing impact of the HIV epidemic generally or on AIDS awareness campaigns (of those, more than two-thirds were related to World AIDS Day activities). While 70% of organizations had general awareness citations, five organizations – AIDS Project Los Angeles (APLA), AMFAR, the Black AIDS Institute (BAI)7, the National Black Leadership Commission on AIDS (NBLCA), and WWC – were responsible for almost half of the total. Among the 23% of domestic citations related to HIV prevention issues (distinct from funding), almost one-third (30%) related to a group of issues that the advocacy community refers to as “prevention defense” – i.e. defensive advocacy in response to federal audits of HIV prevention programs,

7 The Black AIDS Institute was previously known as the African-American AIDS Policy and Training Institute. Subsequent references to BAI include citations for both organizations.

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FEDERAL HIV POLICY ADVOCACY PROJECT

Figure 4 FEDERAL POLICY CITATIONS (2001-2002) (n=437, range=0-41)

3 Media Citations by fed issues ACT UP PHILADELPHIA ADAP WORKING GROUP AIDS ACTION COMMITTEE AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN,YOUTH AND FAMILIES AIDS FOUNDATION OF CHICAGO AIDS HEALTHCARE FOUNDATION AIDS PROJECT LOS ANGELES AIDS RESEARCH INSTITUTE AIDS TREATMENT AND DATA NETWORK AMERICAN FOUNDATION FOR AIDS RESEARCH BLACK AIDS INSTITUTE CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION FLORIDA AIDS ACTION GAY MEN’S HEALTH CRISIS GLOBAL AIDS ALLIANCE HARM REDUCTION COALITION HARVARD AIDS INSTITUTE HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP) HIV MEDICINE ASSOCIATION LIFELONG AIDS ALLIANCE NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS NATIONAL ASSOCIATION OF PEOPLE WITH AIDS NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS NATIONAL MINORITY AIDS COUNCIL NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER PROJECT INFORM SAN FRANCISCO AIDS FOUNDATION TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC

0

10 International Issues

20

30

40

Domestic Issues

reports of wasteful HIV prevention spending, accusations of inappropriately sexually explicit HIV 4 Total Number fed Media Citations

prevention messages, etc. Remaining HIV prevention citations were scattered among a large number of issues, including the efficacy of condoms, the need for or value of prevention campaigns targeting seropositive individuals, the approval of a rapid HIV test, syringe exchange, or various risk factors for HIV transmission. Interestingly, while 60% of all organizations had media citations related to prevention, citations were dominated by regional organizations, with 16% of the total attributed to GMHC, 10% 8% each to APLA and WWC. 63%to ARI and 37% Among the nearly one-fifth (19%) of domestic citations related to HIV funding, more than one-third (35%) referred to the impact of the 9/11 terrorist attacks on AIDS funding, while more than onequarter (27%) referred to the need for funding for a single program: the AIDS Drug Assistance Program (ADAP). While 70% of organizations had citations related to HIV funding, half of all funding citations were attributedDomestic to four national organizations (ADAP Working Group, AAC, NASTAD and International Issues Issues NAPWA) and a single regional service provider, GMHC.

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A smaller yet still substantial portion

Figure 5 DOMESTIC CITATIONS (n=273)

of domestic media citations (12%) concerned the new Bush administration,

Civil Liberties 1% Civil Liberties 1% Prevention Programs Prevention 23% Programs 23% Care Programs Care 1% Programs 1% General Issues 29% General Issues 29% Substance Abuse 0% Education Substance0% Abuse 0% Education 0%

Federal Coordination 12% Federal Coordination 12% Criminal Justice 1% Criminal Justice 1% Funding 19% Funding 19% Drug Pricing 8% Drug Pricing 8% Health care 4% Health care 4% Entitlements 2% Entitlements 2%

which took office in January 2001, at the beginning of the study period. Advocates weighed in on administration appointments to the Presidential Advisory Council 5 Domestic Fed policy citations by issue

on HIV and AIDS (PACHA), the Office of 5 Domestic Fed policy citations by issue

the Surgeon General, the Office of National AIDS Policy, as well as new congressional leadership appointments. Interestingly, citations in this category were broadly distributed among a large number (47%) of national and regional organizations,

Figure 6 INTERNATIONAL CITATIONS (n=158)

Funding 49% Funding 49% Civil Liberties 1% Civil Liberties 1% Workplace Issues 1% Workplace Issues 1%

suggesting a flurry of press releases at the beginning of the administration. Of those, Intellectual Property Intellectual 20% Property 20% General Issues 23% General Issues 23% Prevention 4% Prevention 4% Treatment 2% Treatment 2%

however, 25% could be attributed to two regional organizations (GMHC and SFAF). A surprising number of citations (8%

6 Domestic Fed policy citations by issue

of6 Domestic domestic citations) reflected concern Fed policy citations by issue about prescription drug pricing, an important, though relatively narrow issue that has shown little potential for reform in the past. While 37% of organizations had at least one citation related to drug pricing, 41% of all citations referred to a single

regional organization, AHF, which had initiated a series of lawsuits against Glaxo Wellcome concerning the price of AZT and other drugs. Certain categories that dominated the press in previous years were practically absent: during the entire two year study period only four citations were related to civil liberties, while only two referred to criminal justice or prison issues. Tellingly, there were no citations during the entire period related either to: 1) school-based HIV education, sexuality or health education (except for articles reflecting a general concern for youth); or 2) the intersection between the HIV and substance abuse epidemics, substance abuse treatment programs or methods, or the HIV-related service needs of substance users (with the exception of syringe exchange programs, which were coded as HIV prevention). See Appendix, Tables 4, 6, 7. International issues comprised 37% of all federal HIV policy citations. Strikingly, 60% of these were associated with only three organizations (ACT UP, GAA, and Health GAP). Of all international citations,

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FEDERAL HIV POLICY ADVOCACY PROJECT

nearly half (48%) were related to funding issues, including the US contribution to a global fund for AIDS (what would

Certain categories that dominated the press in previous years were practically absent: only four citations were related to civil liberties, while only two referred to criminal justice issues. There were no citations related to either school-based HIV education or HIV and substance abuse.

ultimately become the Global Fund to Fight AIDS, Tuberculosis and Malaria), funding for bilateral international programs, or debt relief for poor countries. While 89% of organizations that had international citations had citations related to funding, 58% of funding citations could be attributed to only two organizations: GAA and Health GAP. Twenty-three percent (23%) of international citations reflected a general concern related to the global AIDS epidemic, or specifically addressed the United Nations General

Figure 7 BREADTH AND INTENSITY OF MEDIA COVERAGE

Breadth (# of Policy Issues out of 19 possible) 0

2

4

6

8

10

ACT UP PHILADELPHIA ADAP WORKING GROUP AIDS ACTION COMMITTEE AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN,YOUTH AND FAMILIES AIDS FOUNDATION OF CHICAGO AIDS HEALTHCARE FOUNDATION AIDS PROJECT LOS ANGELES AIDS RESEARCH INSTITUTE AIDS TREATMENT AND DATA NETWORK AMERICAN FOUNDATIONFOR AIDS RESEARCH BLACK AIDS INSTITUTE CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION FLORIDA AIDS ACTION GAY MEN'S HEALTH CRISIS GLOBAL AIDS ALLIANCE HARM REDUCTION COALITION HARVARD AIDS INSTITUTE HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP) HIV MEDICINE ASSOCIATION LIFELONG AIDS ALLIANCE NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRS NATIONAL ASSOCIATION OF PEOPLE WITH AIDS NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS NATIONAL MINORITY AIDS COUNCIL NATIONAL NATIVE AMERICAN AIDS PREVENTION CNTR PROJECT INFORM SAN FRANCISCO AIDS FOUNDATION TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC

0

1

2

3

4

5

6

7

8

Intensity (Average # citations/issue) Breadth (# of Policy Issues out of 19 possible)

Intensity (Average # citations/issue)

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Figure 8 2002 ORGANIZATION/POLICY BUDGET

ACT UP PHILADELPHIA ADAP WORKING GROUP AIDS ACTION COUNCIL/ AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES AIDS HEALTHCARE FOUNDATION AIDS PROJECT LOS ANGELES

NA

BLACK AIDS INSTITUTE ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION GAY MEN’S HEALTH CRISIS GLOBAL AIDS ALLIANCE HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP) NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS NATIONAL ASSOCIATION OF PEOPLE WITH AIDS NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

NA

NAT’L MINORITY AIDS COUNCIL

NA

PROJECT INFORM SF AIDS FOUNDATION

$80,000,000

$30,000,000

Policy Budget

$20,000,000

Organization Budget

$10,000,000

$0

WHITMAN-WALKER CLINIC

NA = Policy Budget not available

Assembly Special Session (UNGASS) on AIDS, which was held in 2001. Among organizations with international citations, 61% had citations related to general issues. GAA and Health GAP again dominated the press, accounting for 41% of all citations in this area. International trade issues (including drug patent protections and world trade agreements) were reflected in 20% of international citations. Among all organizations with international citations, 28% had citations relating to trade issues, while three-quarters of trade citations could be attributed to two groups: ACT UP and Health GAP. See Appendix, Tables 4, 5. Most organizations had media citations related to a relatively narrow range of policy issues, suggesting a strategic focus on a limited number of issues or, less charitably, limited capacity, or both.

12

FEDERAL HIV POLICY ADVOCACY PROJECT

$32,500

0%

0 1.5

ADAP WORKING GROUP

% OF ADVOCACY EFFORTS DEDICATED TO FEDERAL ISSUES

ACT UP PHILADELPHIA

RESOURCES AND COMMITMENT TO FEDERAL ISSUES.

2002 POLICY BUDGET

# OF DEDICATED POLICY STAFF (2002)

% OF ORGANIZATIONAL BUDGET DERIVED FROM FEDERAL FUNDING

Organization

2002 ORGANIZATION BUDGET

HIV POLICY ADVOCACY

$32,500

50%

$195,000

85%

$230,000

0%

AIDS ACTION COUNCIL / AIDS ACTION FOUNDATION

$1,500,000

10%

11

$1,500,000

100%

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

$2,600,000

65%

2

$280,000

100%

AIDS HEALTHCARE FOUNDATION

$80,000,000

93%

5

$1,000,000

30%

AIDS PROJECT LOS ANGELES

$21,000,000

35%

7

$575,000

$600,000

0%

0

NA

BLACK AIDS INSTITUTE

30% NA

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

$25,500,000

4%

2

$342,000

100%

GAY MEN'S HEALTH CRISIS

$22,000,000

17%

9

$1,900,000

40%

GLOBAL AIDS ALLIANCE

$232,000

0%

4

$232,000

75%

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

$410,000

0%

4

$410,000

100%

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

$3,500,000

75%

2.5

$200,000

100%

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

$2,100,000

50%

0.5

$50,000

100%

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

$1,490,000

80%

0

NA

75%

NATIONAL MINORITY AIDS COUNCIL

$9,700,000

35%

6

$1,000,000

30%

PROJECT INFORM

$2,000,000

0%

2

NA

65%

SAN FRANCISCO AIDS FOUNDATION

$18,000,000

75%

6

$900,000

70%

WHITMAN-WALKER CLINIC

$27,000,000

50%

1

$265,000

10%

AVERAGE

$12,103,444

33%

3.53

$632,071

68%

$2,350,000

26%

2.25

$376,000

75%

MEDIAN

Table 1: HIV Policy Advocacy – resources and commitment to federal issues. Federal HIV policy capacity, commitment of resources and focus varied sharply among organizations interviewed (overall agency budget range $32,500 - $80 million, median = $2.35 million). For those organizations with a discreet public policy budget, the amount also varied significantly (range $32,500 -$1.9 million, median = $376,000). National organizations directed nearly all of their policy efforts toward the federal arena (range 85-100%), while at regional organizations the proportion tended to be somewhat lower (range 10-70%). Only two-thirds of organizations reported receiving federal funding; of those, the proportion of their overall budget derived from federal funding varied sharply (range 10-93%).

When citations were examined across broad policy issue categories to assess breadth of media exposure, out of 19 possible issue categories, most organizations had citations relating to only a few (range 1-10, median=4). Organizations with greater breadth (those >=75th percentile in number of issues with citations) included one national organization (AAC), three regional service providers (GMHC, SFAF, and WWC) and one research organization (ARI). As would be expected, intensity (as measured by average # of citations per # of issues) was inversely proportional to breadth, probably an indication that agencies chose either to focus heavily

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on a small number of issues, or less heavily on a wider range of issues. Intensity ranged from 1-6.83 (median 2.6). To take account for both possible strategies when reducing the original cohort (n=32) for purposes of interviews, those organizations that scored above the 25th percentile on both measures (shown in grayscale in the table below) were included in the interview cohort (n=18) 8. See Appendix, Table 8. PRIMARY INTERVIEWS

Using the smaller interview cohort derived through an analysis of media citations (described above), a total of 18 primary interviews were conducted, most with executive directors and public policy staff. No organizations declined to be interviewed. Interviews averaged approximately one hour. Federal HIV policy capacity, commitment of resources and focus varied sharply among organizations interviewed. Overall agency budgets ranged from $32,500 (ACT UP) to $80 million (AHF, which is funded primarily through Medicaid reimbursement for services). Median agency budget among all 18 organizations was $2.35 million. While some organizations did not report a discreet policy budget, for those that did, the amount also varied significantly, from $32,500 to $1.9 million, with those at the upper end tending to budget for policy and communications as a single line item (GMHC at $1.9 million and AHF at $1 million). With the exception of AAC at $1.5 million, policy budgets among the national organizations tended toward the low side ($32,500 at ACT UP to $342,000 at PAF), compared to many of the regional organizations, particularly service providers (median $376,000). Again with the exception of AAC (which reported 11), staff lines also tended to be higher among the regional service providers, with GMHC, APLA, and SFAF the highest at nine, seven, and six policy positions, respectively (median=2.25). Typically, dedicated policy staff was situated in a separate policy or government relations department, the portfolio of which sometimes included communications. As would be expected, national organizations directed nearly all of their policy efforts toward the federal arena (range 85-100%), while at regional organizations the proportion tended to be somewhat lower (range 10-70%). Of note among regional organizations, both Project Inform (PI) and SFAF directed substantial proportion of their efforts (65% and 70%, respectively) toward the federal arena. All agencies reported receiving funding from private funders (individuals, corporations or foundations) and/or member dues. Two-thirds of organizations reported a mix of private and government funding (via contract or reimbursement for services). Among agencies that reported receiving government funds, the proportion of their overall budget derived from federal funding varied sharply, from 10%-93%.9 Six organizations reported receiving no federal funding.

8 Two agencies were interviewed but excluded from further analysis: AIDS Research Institute (ARI), at the University of California San Francisco, and the American Foundation for AIDS Research (AMFAR). Because its primary activities are research oriented, it became impossible to compare ARI’s activities with more traditional advocacy organizations; in AMFAR’s case, information concerning organizational priorities was unavailable, as the agency’s public policy program was reportedly in transition during the entire study period. 9 Agencies were asked to report federal funding received directly from federal agencies under contract, or to report funding received from federally-funded, state or locally administered programs, such as Ryan White CARE Act programs or CDC prevention programs.

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FEDERAL HIV POLICY ADVOCACY PROJECT

ADVOCACY, POLICY ANALYSIS, POLICY DEVELOPMENT

CAPACITY BUILDING, COMMUNITY DEVELOPMENT

GRASSROOTS ORGANIZING

CIVIL DISOBEDIENCE, PROTEST

TOTAL # OF FUNCTIONS

POLICY ADVOCACY FUNCTIONAL CAPACITY

ACT UP PHILADELPHIA

Y

N

Y

Y

3

ADAP WORKING GROUP

Y

N

Y

N

2

AIDS ACTION COUNCIL / AIDS ACTION FOUNDATION

Y

N

Y

N

2

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

Y

Y

N

N

2

Organization

AIDS HEALTHCARE FOUNDATION

Y

N

N

Y

2

AIDS PROJECT LOS ANGELES

Y

N

Y

N

2

BLACK AIDS INSTITUTE

Y

Y

N

N

2

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

Y

N

N

N

1

GAY MEN'S HEALTH CRISIS

Y

N

Y

Y

3

GLOBAL AIDS ALLIANCE

Y

N

Y

Y

3

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

Y

N

N

Y

2

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

Y

Y

N

N

2

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

Y

Y

Y

N

3

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

Y

Y

N

N

2

NATIONAL MINORITY AIDS COUNCIL

Y

Y

Y

N

3

PROJECT INFORM

Y

N

Y

N

2

SAN FRANCISCO AIDS FOUNDATION

Y

N

Y

N

2

WHITMAN-WALKER CLINIC

Y

N

N

N

1

# ORGANIZATIONS

18

6

10

5

% ORGANIZATIONS

100%

33%

56%

28%

AVERAGE # FUNCTIONS

2.17

MEDIAN # FUNCTIONS

2

Table 2: Policy advocacy – functional capacity. While effective policy advocacy likely requires all four functions, no organizations reported capacity to engage in all four. While all organizations reported the capacity to conduct advocacy activities, most reported capacity in only one or two additional functional areas (median = 2).

See Table 1. Some informants felt that federal funds compromised effective advocacy, particularly among communities of color, where reliance on government funding tends to be higher: “In the 90’s, when [“white” organizations] had $2 million in private fundraising to do advocacy work, [they] could do and say a lot of things, [they] were beholden to no one. You don’t find anybody now representing communities of color that doesn’t drive their organization 95% on government funding – and particularly in this administration, you don’t speak out… if you want to hold onto your government

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dollars. There are negative incentives. That little audit, after Barcelona – what was that about?”10 Others were even more cynical, suggesting that such a chilling effect was not merely a consequence but a design of government funding: “HRSA likes spreading their TA [technical assistance] money around to organizations that are ‘appropriate’ or related to each of their titles (e.g. CAEAR, NASTAD, the AIDS Alliance for Children, Youth and Families [AACYF]).” Functionally, organizations reported activities that could be grouped within four overall categories. For purposes of analysis, these categories were defined as follows: • Advocacy, policy analysis, policy development: analysis or critique of current or proposed legislation or federal policies; development of model legislation or federal policies; legislative or administrative lobbying or other activities designed to influence legislation, or the development and/or implementation of federal programs. • Capacity building, community development: activities designed to develop or enhance advocacy capacity among regional or local service providers or affiliates. • Grassroots organizing: coordination of constituent activities or mobilization at the local level (e.g. letter, phone, fax, or email campaigns); organizing of constituent legislative visits (district or Washington, D.C.).

Figure 9 # OF HIGH (4) OR HIGHEST (5) PRIORITY ISSUES BY ORGANIZATION

10

6 # High Priority International Issues # High Priority Domestic Issues 5

4

3

2

1

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FEDERAL HIV POLICY ADVOCACY PROJECT

WHITMAN-WALKER CLINIC

SF AIDS FOUNDATION

PROJECT INFORM

NATI’ L MINORITY AIDS COUNCIL

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

GLOBAL AIDS ALLIANCE

HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP)

GAY MEN’S HEALTH CRISIS

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

BLACK AIDS INSTITUTE

AIDS PROJECT LOS ANGELES

AIDS HEALTHCARE FOUNDATION

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

AIDS ACTION COUNCIL/ AIDS ACTION FOUNDATION

ADAP WORKING GROUP

ACT UP PHILADELPHIA

0

• Civil disobedience/protest: public

Figure 10 HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES CITED BY ALL ORGANIZATIONS

demonstrations, marches, sit-ins, or rallies; staged confrontation with government officials or legislators in public

Drug Pricing/ Intl Trade 20% Debt Relief 10% Business/ Workplace Issues 5%

places or forums. While effective policy advocacy likely

Global AIDS Bill 35%

requires all four functions, as would be

11 HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES CITED BY ALL ORGANI

Global Appropriations 30%

expected, no organizations reported capacity to engage in all four. While all organizations reported the capacity to conduct advocacy activities, at least to some degree, most reported capacity in only one

or two additional functional areas (median = 2). Slightly more than half (56%) supplemented their advocacy with grassroots organizing, and only slightly more than one-quarter (28%) with civil disobedience or protest.

Prevention for positives 3%

See Table 2.

Rapid Testing/CLIA waiver 9% Medicaid, ETHA, healthcare access 9%

Relationship building

6% When asked to name which HIV policy issues were a

Drug pricing 3%

Approps – proprietary 26%

priority, and to rate the intensity of their effort on each pri-

Needle Exchange (DC approps) 6%

Approps – AIDS portfolio

6% ority issue on a scale of one to five (with four equaling a

Prevention defense/ abstinence only 10%

Program (HRSA)

Implementation high priority and five equaling a highest priority), most 10% Mandatory testing organizations named only a handful of(pregnant issues (average 1.11 women/newborns)

Pediatric drug research/ testing 3%

3%

international, 1.78 domestic) as a high priority, suggesting Immigration ban

“There are a lot of issues that aren’t necessarily our priorities, but that we get sucked 12 hIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES CITED BY ALL ORGANIZA into [e.g. abstinence only, prevention content, federal audits, condoms]. You can’t go to AIDS meetings and not do them.”

0%

that they had made a strong contribution, or highest priority, suggesting that they had undertaken a leadership role. Over one-third of organizations (39%) included an international issue among those that they named as high or highest priorities. Three organizations (ACT UP, GAA, and Health GAP) reported only international issues as high or highest priorities. International work concentrated on two key Healthcare access, issues: a global AIDS authorization bill and appropriations for global AIDS funding. All organizations entitlement programs (Medicaid, Medicare)

Prevention

25% reporting international work cited these two issues 23%among their priorities: 62.5% of organizations Washington,

Civil Rights/ADA

advocacy capacity 16%

Global advocacy

broad-based policy cited both issues among their highest priorities. As 5% a consequence, for organizations that worked

13 CRITICAL ADVOCACY GAPS (by ISSUE or STRATEGY) CITED BY ADVOCACY ORG

on these issues, the intensity of effort was very high, 5% averaging 4.5 for the global authorization bill Activism, community organizing 5%

Welfare reform/

and 4.25 for global funding. Five organizations (62.5%) poverty issues also cited drug pricing and international trade 5%

Better strategy, issues, with 50% of those also naming these among their high or highest priorities. Specialissues pops: IDUs, better targeting, better planning 11%

See Appendix, Table 9.

prisoners, veterans, mental health 5%

10 Following the disruption of HHS Secretary Tommy Thompson’s address to the 2002 International AIDS Conference in Barcelona, the administration was asked by members of Congress to report the amount of federal funding awarded to organizations that participated in the protests. At the same time, a number of agencies that receive federal HIV funding were the subject of government audits. While the government claims the audits were routine, many in the community suspect a quid pro quo.

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More than three-quarters (78%) of organizations reported domestic high- or highest-priority issues, although the number of issues reported by individual organizations was still small (range 03, average=1.78). Almost half (44%) of all organizations named proprietary appropriations (appropriations for a single line in the federal budget, or for a limited range of lines) as a high or highest priority. Of those, the average intensity of effort was very high (4.56), while 77% rated proprietary appropriations among their highest priorities. Two other issues were named by a large number of organizations, though for the most part, not as high priorities: Medicaid and healthcare access (named by 10 – 56% – of organizations) and “prevention defense” (named by 39% of organizations). The intensity of effort on these issues was also substantially lower. For Medicaid and healthcare access issues, the average intensity was 3.10, with five organiza“Any meaningful, thoughtful work on entitlement programs is totally missing. There is no [depth of thought] in terms of program analysis, policy analysis, or in terms of effective advocacy. It’s just not there.”

tions scoring four and no organizations scoring five. For prevention defense, average intensity was 3.43, with one organization (APLA) reporting an intensity of four and two (GMHC and AACYF) reporting an intensity of five. Some informants suggested that prevention defense was an example of an issue to which agencies felt compelled to respond, whether or not it was consistent with their strategic plans: “There are a lot of issues that aren’t neces-

sarily our priorities, but that we get sucked into [e.g. abstinence only, prevention content, federal audits, condoms]. You can’t go to AIDS meetings and not do them.” A small number of issues were reported as a highest priority, but only by one organization (for AACYF, mandatory testing of pregnant women and/or newborns; for NAPWA, prevention for positives; for PI, drug pricing; for PAF, pediatric drug research) or two organizations (for APLA and SFAF, relationship building with the new administration; for AAC and APLA, overall AIDS appropriations; for AAC and WWC, needle exchange restrictions in the Washington appropriations bill). See Appendix, Table 10. All organizations were asked to name (without prompting) specific HIV policy issues that they – without regard to their own organization’s agenda or priorities – felt constituted gaps in the overall community’s HIV policy advocacy capacity. Almost half (47%) of organizations named entitlement programs (Medicaid and Medicare) and healthcare access issues. As one informant noted: “Any meaningful, thoughtful work on entitlement programs is totally missing. There is no [depth of thought] in terms of program analysis, policy analysis, or in terms of effective advocacy. It’s just not there.” Forty-two percent (42%) of organizations cited HIV prevention and related issues as a gap, although many noted that the situation had improved as of 2003, as “prevention defense” issues succeeded in at least partially mobilizing the community. As one informant summarized: “The only defense of CDC programs and appropriations is done in coalition efforts when people have time...” Perhaps tellingly, a number of issues that historically have been of importance to people with HIV

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FEDERAL HIV POLICY ADVOCACY PROJECT

10

6

Business/ Workplace Issues 5%

Global Appropriations 30%

11 HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES CITED BY ALL ORGANIZATIONS

# High Priority International Issues # High Priority Domestic Issues 5

4

and to the HIV community at large were

Figure 11 HIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES CITED BY ALL ORGANIZATIONS

neither identified as priorities by HIV policy advocacy organizations nor were they

3

2

identified by more than one or two organ-

Prevention for positives 3%

izations as critical advocacy gaps:

Rapid Testing/CLIA waiver 9%

• substance abuse or drug users, drug

Medicaid, ETHA, 1 healthcare access 9% Drug pricing 3%

WHITMAN-WALKER CLINIC

PROJECT INFORM

SF AIDS FOUNDATION

NATI’ L MINORITY AIDS COUNCIL

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

Approps – AIDS portfolio 6%

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

NAT’L ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

GLOBAL AIDS ALLIANCE

HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP)

GAY MEN’S HEALTH CRISIS

BLACK AIDS INSTITUTE

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

Pediatric drug research/ testing 3%

AIDS PROJECT LOS ANGELES

AIDS ACTION COUNCIL/ AIDS ACTION FOUNDATION

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

ADAP WORKING GROUP

Prevention defense/ abstinence only 10%

AIDS HEALTHCARE FOUNDATION

Approps – proprietary 26%

Needle Exchange (DC approps) 6% ACT UP PHILADELPHIA

0

Relationship building 6%

Program (HRSA) Implementation 10%

Mandatory testing (pregnant women/newborns) 3% Immigration ban 0%

law reform (except needle exchange) • prisons or prisoners, criminal justice issue

12 hIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES CITED BY ALL ORGANIZATIONS by

• mental health services • poverty, welfare reform • civil liberties, ADA, discrimination • HIV education in the schools, sexuality education Addressing gaps in HIV policy advo-

Figure 12 CRITICAL GAPS IN HIV ADVOCACY CAPACITY AS CITED BY ADVOCACY ORGANIZATIONS

14 50

30

tain disconnect with the community’s

Healthcare access, entitlement programs (Medicaid, Medicare) 25%

Prevention 23%

Washington, broad-based policy advocacy capacity 16%

Civil Rights/ADA 5%

Issue or Strategy Gap

Global advocacy 5%

Activism, community organizing 5%

Welfare reform/ poverty issues 5%

Better strategy, better targeting, better planning 11%

Special pops: IDUs, prisoners, veterans, mental health 5%

20

primary constituency: “Discrimination, human rights, stigma, ADA – quite frankly,

our13constituency [people withor AIDS] wants CRITICAL ADVOCACY GAPS (by ISSUE STRATEGY) CITED BY ADVOCACY ORGANIZATIO us to take them on in a bigger way… There is a huge assault on the ADA going on right now. All we’ve really been able to do is sign-on letters when cases are in front of the Supreme Court. We haven’t been real players in the broader coalition

10

to defend or reshape the ADA. For people with HIV, our legal protections are hangWashington, broad-based policy advocacy capacity

Activism, community organizing

Better strategy, better targeting, better planning

Special pops: prisoners, veterans, IDUs, mental health

Welfare reform/ poverty issues

Global advocacy

Civil Rights/ADA

Prevention

0

Healthcare access, entitlement programs (Medicaid, Medicare)

% of all organizations

40

cacy capacity, one informant noted a cer-

ing from the very narrowest of strings right now.” Organizations also conceptualized critical HIV policy advocacy gaps in terms of strategy or functional capacity. For example, one-third (32%) of organiza-

tions regarded the lack of broad, Washington-based HIV policy advocacy capacity as a critical gap, a view held by organizations both inside and outside the Beltway. One informant commented: “Staff members from local and regional organizations should complement the national organizations. I don’t think our [regional] staffs will ever be sufficient to replace people whose time is fully dedicated to working nationally and being focused on critical issues, developing partnerships with Congress

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and the Administration and other policy advocates across disciplines, and doing the research.” Others (21%) identified the lack of strategic planning (with a particular emphasis on working with the GOP), targeting and collaboration capacity. Informants attributed a lack of broad Washingtonbased advocacy capacity to many things, including: 1) competition and infighting among advocacy organizations for appropriations dollars; 2) a less profound need (for services, in particular) than during earlier times, in part due to the success of antiviral treatments; 3) the demands of operating service programs; and 4) the challenges posed by refining mature programs, as opposed to developing new pro“We need to own that a lot of organizations doing advocacy are doing it for their programs and their members – that [reality is] not inherently evil but it deserves to be named and treated honestly. It’s about keeping these programs going – and they’re important. Our constituency depends on them.”

grams. “In part, we’re victims of our own success. It’s easier to do advocacy when you’re shaking [your fist], saying ‘do something, do anything,’ because there’s not much happening and you’re trying to build something up. And then all of a sudden you have multibillion-dollar federal programs in place and you’ve got people off running them, and busy writing quarterly reports. The urgency is different – and quite frankly so are the needs. Things are better now. More people are getting services...community organiza-

tions are getting funded. That’s a huge success. We deserve to be proud of that, to celebrate that – but the reality is, nobody [attempts] to revamp the agenda to [account for that new reality] and you get all kinds of everything, from turf and self-interest.” The following table illustrates the critical gaps (both issue-based gaps, as well as strategic or functional gaps) in the overall HIV community’s policy advocacy capacity, as identified by informants. See Appendix, Table 11.

PHASE I DISCUSSION Without question, the HIV policy advocacy landscape in 2003 is very different from 15, 10, or even five years ago. Interviews reveal a palpable sense of “crisis” among advocates; that a once vaunted HIV policy advocacy movement has become enfeebled. But there are more organizations conducting HIV policy advocacy than ever before. An analysis of media articles and public documents, as well as interviews with HIV policy organizations reveals a number of paradoxes: • While AIDS policy issues receive a fair amount of media coverage, much of the exposure garnered by HIV policy organizations is reactive (i.e. organizations are asked to comment about issues that are not the result of advocacy – such as abstinence only programs – but rather are the product of adverse or negative policymaking). • Similarly, while a fair amount of HIV policymaking is underway in Washington, much of it seems to occur in spite of HIV advocacy efforts. The Bush administration has been aggressive with its

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FEDERAL HIV POLICY ADVOCACY PROJECT

HIV policies, and policy advocates are frequently in a defensive position. With the exception of global AIDS issues, the community seems short of forward-thinking proposals. • Ironically, overall resources (both budget and staff) dedicated to HIV policy may be at an all-time high, but a large number of those interviewed complained of a system-wide deficit of comprehensive HIV policy advocacy capacity. • Informants commonly cited a “brain drain” to account for a lack of broad, Washington-based HIV policy advocacy capacity. (Sadly, though informants did not mention it per se, it must also be noted that the HIV community has suffered profound losses from within its advocacy ranks due to deaths from AIDS.) But there remains a relatively large number of intelligent, sophisticated individuals working in Washington, D.C. on HIV policy issues. SPECIALIZATION

In part, as demonstrated both by media citations and confirmed in interviews, these paradoxes are the result of specialization. For a variety of reasons, most HIV policy organizations take on a relatively narrow range of issues, many of which are in their direct self-interest, the most important of which is funding. National policy organizations are not wholly to blame for this phenomenon. The importance of categorical (i.e. HIV-specific) funding in the context of our health care system cannot be overstated, nor is it, in the absence of a national health care program, unique to HIV/AIDS. As a consequence, the constituencies of most national policy organizations demand a focus on money to support local programs. As one informant summarized: “We need to own that a lot of organizations doing advocacy are doing it for their programs and their members – that [reality is] not inherently evil but it deserves to be named and treated honestly. It’s about keeping these programs going – and they’re important. Our constituency depends on them.” For many organizations, federal appropriations dominate the HIV policy landscape. In a sense, this is the direct result of successful HIV policy advocacy in years past. There are now multiple, wellestablished funding streams supporting HIV programs in many areas. Advocacy related to these programs (not only legislative advocacy to secure funding, but administrative advocacy to influence how programs are administered – i.e. regulations and policies at the agency level) consumes an enormous proportion of all advocacy efforts. Nowhere is this more true than with ADAP, which by some measures is an overwhelming success (it provides life-saving drugs to thousands of people who could not otherwise afford them) and by others a stark failure (it doesn’t even begin to meet the need, and the effort required to constantly enhance appropriations consumes a vast amount of resources – i.e. brainpower, money, political capital, and time). Moreover, the ADAP cycle is endless: there will never be enough money to meet the need, so the advocacy cycle must be repeated every year. ADAP is hardly the only example. The same dynamic applies to virtually every other categorical program, from Ryan White CARE Act programs to the Housing Opportunities for People With AIDS programs to CDC HIV prevention programs. The Ryan White CARE Act in particular (of which ADAP is one component), has been extremely successful at building and motivating a constituency,

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and at spreading the wealth among states and among congressional districts. One informant commented: “In the 1990’s, so much money flooded into the community that now, everybody [has] ended up with a different constituency group, all advocating for their own funding streams, and fairly successfully.” For example, with Ryan White, the largest categorical program with over $2 billion in annual funding, each of four main components (titles) now constitutes the highest advocacy priority for a different organization. The CAEAR Coalition exists solely for the purpose of advocating for Titles I and III funding and implementation; NASTAD exerts enormous effort on behalf of Title II; the ADAP Working Group is focused only on ADAP; for AACYF, Title IV programs are a top priority. Across titles, there is a similar “In the 1990’s, so much money flooded into the community that now, everybody [has] ended up with a different constituency group, all advocating for their own funding streams, and fairly successfully.”

focus among minority organizations (NMAC, BAI, and NBLCA) on the Minority AIDS Initiative (MAI), which although it crosses agencies and funding lines, is conceptualized by these groups as a single appropriation and program. In every case, organizations have developed substantial, sometimes highly technical expertise in the administration and implementation of programs, allowing them to offer detailed and very specific comments and critique to HRSA

and CDC related to program regulations, policies and practices. With respect to this narrow range of issues, this technical capacity serves the community well. For example, NASTAD and the CAEAR Coalition contributed very substantive feedback to HRSA – sometimes welcome, sometimes not – on specific aspects of the implementation of the Ryan White CARE Act Amendments of 2000, such as how “emerging communities” or “severe need” were defined for purposes of the award of ADAP supplements. Similarly, the Minority AIDS Initiative Working Group, an ad-hoc coalition of peopleof-color advocates, as well as other groups, advocated heavily to preserve criteria that define which agencies qualified for MAI funding, in light of a potentially adverse Supreme Court ruling. Happily, as a consequence, these federal HIV programs are relatively well funded and relatively well administered. Unhappily, the maintenance of effort required to sustain them likely detracts from other policy priorities. In contrast with the advantages specialization confers – and there are several – it has pronounced disadvantages as well. The first is somewhat benign: it’s that agencies are forced to respond to emerging issues on the fly. That is, they are compelled to engage issues for which they are ill prepared, and which ultimately distract from their planned agendas. There were numerous examples during the study period (most concerning HIV prevention): the requirement that HIV prevention programs utilize an “abstinence-only” approach, congressional scrutiny of agencies that provide explicit HIV prevention campaigns (mostly targeting gay men, such as the STOP AIDS campaign), the suggestion that condoms are an ineffective HIV prevention approach, the emphasis on seropositive individuals as the target for HIV prevention campaigns (to the exclusion of other at-risk populations), etc. National agencies like AAC, NASTAD, NAPWA, and NMAC, as well as regional service providers like

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FEDERAL HIV POLICY ADVOCACY PROJECT

APLA, GMHC, and SFAF – none of which prospectively identified HIV prevention as a policy priority – all reported responding to these issues, to unexpectedly dedicating staff resources, and to having to develop expertise. The results, in many cases, were as might be expected: substandard advocacy, a diversion of resources, and less than ideal policy outcomes. The second disadvantage is more insidious. Such intense focus on narrow program components of the federal AIDS portfolio may preclude a broader perspective, effectively short-circuiting debate on systemic programmatic reform. In other words, the very success of ADAP may relieve pressure to fix, adapt or (ideally) reinvent more comprehensive programs – like Medicaid – to better address the needs of people living with HIV. With everyone defending their particular program – and their piece of the appropriations pie – there’s not much incentive (or even room) to consider the overall system, or how various programs complement, or don’t complement each other. The Ryan White CARE Act provides the most obvious illustration of the consequences of this micro-focus. Conceptualized as an emergency program, 13 years later many CARE Act programs are segregated from (rather than integrated within) the larger healthcare delivery system. CARE Act money now flows virtually everywhere. As the AIDS epidemic grew, matured, and ultimately became endemic (suggesting not that AIDS does not continue to constitute a healthcare emergency, but that it has become a relatively permanent component of the public health environment), one might guess that CARE Act programs also would have evolved, and that the healthcare system (which prior to 1990 was certainly in need of an emergency fix) would ultimately have adapted sufficiently to accommodate the needs of people with HIV. While there are no-doubt many reasons why this has not happened, title-focused CARE Act advocacy does not encourage – and may discourage – thoughtful discussion of reform. One informant summarizes: “There’s not a really good depth of understanding among many of the people working on the issues about the interaction of these [AIDS] programs, the way they really impact people living with HIV/AIDS – and it becomes much easier to just go up there and ask for a few more million than to do the much harder work of thinking through some of these programs. The expertise is just not there right now – for [this] organization and for others. ...[We] just don’t have the staff to do it anymore.” A third adverse consequence of specialization is that constituencies or issues without a categorical program to their name tend to get left by the wayside. In Washington, no constituency means two things: 1) no voice in discussions of large all-encompassing programs, like welfare, social security, or Medicaid and Medicare, and 2) no categorical programs. Medicaid – which is arguably the most important federal program for people living with HIV, as it provides the majority of their health care – is a perfect example. But AIDS advocates identify entitlement programs (like Medicaid) as the single most important gap, system wide in HIV policy advocacy capacity. How can that be? In part, it’s certainly because Medicaid advocacy – unlike appropriations advocacy, which is, as one advocate described it, “a no-brainer” – is enormously technical, complicated, incremental, and hard to measure. But more likely, it’s because Medicaid dollars, vast though they may be, are hard for HIV advocacy organizations to hold up as a trophy, because they are neither appropriated nor HIV-specific and hard for local organizations to appreciate,

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because they do not trickle down, at least not on a contract basis, like Ryan White money. As a consequence, there are few HIV organizations that make Medicaid a top policy advocacy priority and none among the HIV policy advocacy organizations studied, with the exception of GMHC (which has developed and maintained substantive expertise), and to a lesser extent PI (which consistently includes Medicaid reform and related issues among its grassroots organizing activities). In addition to the enormous consequences of this omission, among the HIV advocacy community at-large, the lack of attention to Medicaid is emblematic of a lack of attention to poverty, and to issues that disproportionately affect the poor, like welfare reform. As one informant summarized: “[In the AIDS community, there is a] lack of analytical capacity to understand health care in this country, and within that, HIV and poverty-, gender-, and immigration-related issues. We have a patchwork of advocacy... and our priorities are based upon a worldview from the beginning of the epidemic. [Our inability to integrate] gender and poverty issues is a reflection of that.” Similarly, in part because the “The real problem with HIV prevention is that we have no idea what it is that we want. We know we don’t like where the administration is going, but we don’t know why, and we can neither offer any meaningful critique nor propose any alternatives.”

only HIV funding for substance users comes in an impossible-to-track carve-out within the SAMHSA block grant (and new categorical programs are unlikely), there is virtually no organized advocacy at the federal level on behalf of substance users – ditto prisoners, veterans, or the mentally ill, all populations significantly affected by HIV. For reasons that are harder to understand – because there is a substantial funding stream through the CDC – HIV prevention advocacy seems also to have fallen by the wayside. It may be that because most prevention funds

are distributed to state and local health departments and then to CBOs, constituents don’t identify with HIV prevention programs in the same way that they do with Ryan White programs. Or it may be because people at risk for HIV infection (arguably the constituency for HIV prevention programs) don’t self-identify as such, unlike people living with (and at risk of dying from) AIDS. Neither is shortchanging prevention unique to HIV/AIDS, but is rather a characteristic of our healthcare system, both because its implementation (which often requires motivating behavioral changes) is so difficult and because its success (i.e. disease averted) is so much more difficult to quantify compared to that of treatment programs. Whatever the reasons, advocates are uniform in their analysis that there is no effective HIV prevention advocacy capacity in Washington and that the results of that gap will be dire: “The co-opting of HIV prevention is going to be catastrophic – it’s already catastrophic. We can’t seem to get organized to do anything about it.” When the Bush administration (and the Republican Congress) began to challenge the HIV prevention status quo, it took months before an effective advocacy response could be made, largely because no Washington-based (or regional) advocacy organization maintained in-house expertise and commitment. Faced with a relatively radical re-engineering of the HIV prevention program to prioritize counseling and testing, combined with interventions targeting seropositive individuals

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FEDERAL HIV POLICY ADVOCACY PROJECT

(the current system favors outreach and education targeting primarily at-risk seronegative or serounknown individuals) the advocacy community was caught by surprise. Then, once confronted, they offered few coherent criticisms and no credible alternatives. As summed up by one leading community advocate: “The real problem with HIV prevention is that we have no idea what it is that we want. We know we don’t like where the administration is going, but we don’t know why, and we can neither offer any meaningful critique nor propose any alternatives.” Another informant is more expansive: “Now, the community is waking up to a more sophisticated approach to prevention issues, but for a long time people sort of stepped back and didn’t react – or didn’t know how to react – to a change in the prevention agenda within the administration. [Our response] was very reactive, rather than proactive – nobody was putting a positive vision of prevention out there. Everybody was just getting sucked into “condom wars” but nobody was really articulating what prevention should look like ...and that’s a problem because prevention does need changing, prevention always needs changing. We have to stop just circling the wagons and talking about what we’re doing now as [if it’s] everything we should be doing. But [people are afraid that] if we acknowledge that [prevention] isn’t perfect, then that will give Claude Allen [Deputy Secretary of Health and Human Services and a persistent critic of HIV programs] permission to say it’s not perfect, too, and the Bush people will make their changes. Had we been much more proactive about a positive prevention agenda, we might be having a different discussion right now.” Historically, there have been interesting exceptions to the above analysis. There are effective Medicaid advocates, for example. The same individuals were identified repeatedly by advocacy organizations. They are: Jeff Crowley (Georgetown University), Robert Greenwald (now an independent consultant), and Christine Lubinski (Infectious Disease Society of America). What’s interesting is that these advocates used to represent HIV policy advocacy organizations (NAPWA, AIDS Action Committee [Boston] and AAC, respectively). When they left, they took with them not only their expertise, but apparently, the institutional commitment to the issue as well. This suggests that for certain issues (those least likely to be a high organizational priority, like Medicaid or HIV prevention), agencies sometimes develop capacity by chance, as a function of staff interest. When personnel move on, so does the expertise. (Of course, all advocacy is personnel dependent – but it’s a fair bet that if NASTAD’s expert on Title II programs, or AACFY’s expert on the pediatric research network moved on, they would be replaced.) A CRISIS IN BROAD WASHINGTON-BASED ADVOCACY CAPACITY

Finally, although largely an unspoken reality, specialized program advocacy doesn’t only ignore other programs; it sometimes actively diminishes them. While all organizations surveyed underscored a unified, one-for-all, all-for-one approach to appropriations advocacy, some individuals also acknowledged that in a zero-sum-gain environment where appropriations are flat (or worse, declining), one program’s win is another program’s loss. While nobody admits advocating taking money

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from one program to enhance another, in reality such compromises are probably at least tacitly approved. Such an environment breeds mistrust and further discourages dialogue. In the recent past, this competition emerged into the open during debates concerning authorizing legislation, where there is a greater sense that everything is up for grabs. During the 2000 reauthorization of the Ryan White CARE Act (and the 1996 reauthorization before that), for example, the “formula fights” over how money is allocated among programs fractured the advocacy community. More than a few individuals speculated that during 2000, such fights disabled AAC – once the leading HIV policy organization in Washington – to such an extent that it has yet to recover. One informant summarized: “Ryan White CARE Act reauthorization might have permanently damaged AIDS Action [Council] – specifically fights around formula issues that caused key supporters to drop out.” Alternately, the suggestion that a growing dependence on federal funding has neutered HIV policy advocacy has presented a tantalizing analysis for some critics.11 But evidence to support this theory is shaky. Among organizations interviewed, federal funding ranged from none to a whopping 93%. But there was no Although largely an unspoken reality, specialized program advocacy doesn’t only ignore other programs; it sometimes actively diminishes them.

discernable pattern suggesting that agencies who received more federal funds were less effective advocates. In many cases, the opposite appeared to be true – SFAF and AHF, for example, have been extremely effective advocates but receive 75% and 93% of their funding, respectively, from federal sources. While it’s true that the most vociferous, aggressive, and confrontational organizations – including ACT UP, GAA, and

Health GAP – receive no federal funds, it’s also true that these groups differ from federally-funded organizations in other important ways. By their nature, government funded organizations generally maintain a level of institutional infrastructure that allows them to support programs that the government wants to fund in the first place. This infrastructure, in turn, typically requires an inherently more conservative institutional posture, where the views of multiple stakeholders must be taken into account, including conservative boards of directors, major donors, and foundation supporters. Moreover, for these multiple stakeholders, the currency of organizational success is not limited to government funding, but also includes institutional prestige in the form of access to high-level officials, seats on advisory councils and committees, invitations to government functions, etc. In return, the CBO provides the government with tangible evidence of its support for the community. In other words, the relationships between CBOs and their government funders by their nature tend to be multifaceted and symbiotic partnerships, partnerships that provide many disincentives for confrontation. While there are exceptions, these organizations are by their nature more likely to participate in policy advocacy as insiders. Whether that role confers an advantage or a disadvantage as far as the effectiveness of these organizations’ policy advocacy probably can’t be generalized across

11 Chibbaro, Lou. The Death of AIDS Activism? Critics charge AIDS groups, beholden to federal funds, have lost their voice. Washington Blade. Feb 21, 2003.

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different questions and different circumstances. Conversely, organizations that do not accept government funds – either as a matter of policy, or because they do not provide services that the government is interested in funding – are often less institutionally constricted, and therefore less beholden to conservative stakeholders. These groups are much more likely to assume an outsider role in policy advocacy, a role where the currency of organizational success is tied explicitly to their capacity to confront or challenge the government. But just as an insider role isn’t automatically more or less effective, neither do confrontational tactics necessarily guarantee effective – or ineffective – advocacy. In the broadest sense, successful policy advocacy is dependent on both roles – the classic “good cop, bad cop” strategy. In any case, federal funding cannot be used to support advocacy; it must be funded through membership dues, individual gifts, or foundation or corporate grants, although in agencies with substantial federal funding, the line between advocacy and program activities is often decidedly blurry. Moreover, the debate over the nefarious influence of federal funding obscures a more fundamental problem: as was noted by a number of informants, funding for policy advocacy has spectacularly declined in recent years. Foundations that used to fund major policy initiatives, including the Gund Foundation, the MetLife Foundation, the Kaiser Family Foundation, and others have largely ceased their direct grant making for such programs.12 In the past, these foundations provided critical support for specific components of the policy advocacy agenda, including policy analysis and development and interagency collaborations, which served to supplement the policy portfolio not only of AAC, but of other organizations as well. One informant summarized: “Nobody has the resources they use to have to do advocacy work in the broadest sense – policy analysis, whatever. In Washington, the groups that are trying to do advocacy have got government money, they’re trying to run programs funded with government money and on the side do a little advocacy.” While it was not the purview of this study to examine the role of HIV/AIDS policy funding, the fact that there are now fewer funds available to conduct HIV advocacy suggests that there are additional questions about the role of funders. Whether the current malaise in Washington-based advocacy is attributed to specialization, community infighting and competition, or simply the lack of funding, the situation was not always so dire. Most advocates recalled a time when AAC provided coherent HIV advocacy leadership. Founded in 1984, by the early 1990s the agency had a $2 million+ budget and a staff of 22. In its prime, AAC performed three essential functions: • It provided substantive, mostly uncompromised policy expertise. AAC was acknowledged to be the leader (or at least an important player) in a broad range of issues, including issues that are

12 Among foundations, the Kaiser Family Foundation plays a unique and important role, because while it no longer conducts external HIV policy grantmaking, it directly operates extensive HIV policy programs, including state-of-the-art information services, policy analyses, conferences, etc. As such, it is a premier and central source of information for advocates both in the U.S. and abroad. In total, KFF spends over $16 million per year on its HIV/AIDS programs. Similarly, several academic research centers (including the AIDS Research Institute at the University of California San Francisco, the Center for Health Policy Research and Services at George Washington University, and others) also maintain extensive HIV policy programs, the purpose of which is, in part, to conduct research and develop policy analyses, critiques, model initiatives, and other policy proposals. While assessing the extent to which these organizations contribute to the efforts of HIV advocacy organizations, or describing the nature of their interactions or collaborations, is beyond the scope of this report, their role in the development of federal HIV policy remains a fertile area of inquiry.

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now frequently orphaned, like Medicaid and other entitlement programs, biomedical research, and HIV prevention. To at least some extent, AAC was not considered beholden to any particular program or funding stream. • It served as a forum for regional AIDS providers. Through its board of directors and public policy committee, AAC provided a forum for regional organizations (particularly the big ones) to engage the federal public policy debate, to contribute their perspective as service providers, and to inform a grassroots response on federal public policy issues – in short, to collaborate and (sometimes) to compromise. • It convened a broad-based, national AIDS coalition. Through the NORA coalition, AIDS Action provided two important functions: 1) it served as a very broad coalition of well-established, mainstream Washington-based organizations across a wide variety of issues and constituencies, and as such, carried enormous credibility; and 2) through its executive and working committees, it provided a forum for other Washington-based HIV organizations (most of whom were not involved in AAC’s board or public policy committee) to come together, at best to collaborate and at minimum, to dialogue. “We don’t have any sort of plan – there’s a complete void of leadership in Washington. The national organizations are imploding left and right.”

In its time, with these three functions together, AAC provided leadership for what was an effective, national HIV policy movement. Because even while AAC’s staff capacity was at its strongest, the agency was still dependent on its partners – the CBOs that supported it directly and the Washington-based agencies that it corralled – to actually do the public policy legwork, in Washington or at the grassroots. When support from its

partners diminished – either because of AAC’s political missteps, or due to an inability to compromise among those organizations that constituted its supporters, or both – the agency began to lose its credibility. Today, AAC is but a shadow of its former self, with very little staff, far fewer organizational supporters than it once had, and very little in the way of community support. In fact, it is difficult to find individuals outside the agency who will speak in its defense. Within the past year, the NORA executive committee resigned en masse, and while the Coalition continues to function, it is unclear what its future will be. (Even congressional staffers seemed aware of NORA’s demise – or at least of the tension surrounding its continuing functioning.) Of course, organizations in Washington do come and go, and the displacement of AAC may simply be the result of bad management, poor personnel choices, or shortsightedness on the parts of AAC’s constituent organizations. While it is beyond the scope of this paper to explore AAC’s downfall (or potential for resurrection), the fact that no organization is currently able to support these three critical functions is of utmost urgency. As one informant notes: “We don’t have any sort of plan – there’s a complete void of leadership in Washington. The national organizations are imploding left and right.” Other organizations that seem at least circumstantially suited to assume a leadership role in HIV public policy (by virtue of their not being tied to a specific funding stream or constituency) – AMFAR, NAPWA, and NMAC, for

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example – have, for whatever reasons, chosen not to, or proved unable to do so. In 2002, as NORA was imploding, NASTAD, NAPWA and NMAC joined together to convene a new, ad-hoc group, arguably as an alternative to AAC and NORA, later dubbed the Federal AIDS Policy Partnership (FAPP). FAPP currently meets quarterly, and draws 30+ representatives from all major Washington-based and several regional HIV policy advocacy organizations. Of note: FAPP meetings are currently attended by many agency executive or policy directors, suggesting a high level of interest and organizational commitment. FAPP is co-chaired by Florida AIDS Action (a relatively new, but active player in the federal arena), and, oddly, GMHC, who also chairs AAC’s board of directors. (AAC staff also attends FAPP meetings as equal participants with other organizations.) At present, FAPP has no budget and no staff, and functions wholly as an ad-hoc coalition. Individual participants contribute meeting space and other tangible items. FAPP also has “affiliated work groups,” including Prevention Defense, Medicaid Defense, National Appropriations Advocacy Group, Global AIDS Roundtable (the spin-off from the defunct NORA International Issues Working Group [IIWG]), Communications Roundtable, Community Mobilization, and Research. FAPP meetings typically include reports and discussion relating to affiliated workgroup activities. FAPP meetings are sometimes convened in conjunction with congressional visits or other coalition activities. For example, a recent meeting was followed by a day of Capitol Hill visits pertaining to Medicaid for participants who wished to participate.

The upcoming Ryan White reauthorization will likely provide the first major test of FAPP’s commitment, resolve to stay together, and capacity to foster collaboration and compromise among its members.

The upcoming 2005 Ryan White reauthorization (negotiations for which will probably occur in 2004) will likely provide the first major test of FAPP’s commitment, resolve to stay together, and capacity to foster collaboration and compromise among its members. The July 2003 meeting was attended by the director of HRSA’s Bureau of HIV/AIDS, who gave a presentation on Ryan White Reauthorization. Following the presentation, FAPP formed a new Ryan White Reauthorization Work Group, chaired by the CAEAR Coalition (also odd, as the CAEAR Coalition has been known to be a particularly ruthless advocate for its own programs). To date, serious disagreements over substantive issues have yet to emerge. While FAPP members do collectively develop policy positions, FAPP itself does not promulgate coalition positions, at least not in the coalition’s name. Rather, FAPP serves primarily as an information-sharing forum and a vehicle for collaboration when convenient. FAPP maintains this organizational neutrality via an “opt-in, opt-out” process whereby members who “opt-in” (i.e. sign on to a particular position) essentially constitute an ad-hoc coalition for the purpose of advocating whatever position is at hand. Disagreements over strategy are evident, on the other hand, though not necessarily more so than would be expected during any healthy discussion. At a recent meeting, for example, FAPP members disagreed over the value of collaborating with overtly conservative organizations who claim to have access in the Republican White House, but who may hold positions that are anathema to at least some FAPP participants.

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While FAPP’s future seems unclear, there seems to be recognition among its members that it has at least the potential, if it can retain its broad support, to evolve into a new organization. But while it now performs some of the functions previously conducted under the auspices of NORA (i.e. providing a convenient mechanism for like-minded organizations to collaborate), it has yet to be seen whether FAPP, which is essentially leaderless by design, can effectively broker compromises among its members. CHANGE IN ADMINISTRATION

The fractured state of the HIV policy advocacy movement has proved disastrous during the Bush administration. After eight years of the relatively friendly Clinton administration, the community had perhaps become complacent and was certainly unprepared for how difficult it would be to secure access within a Republican administration, how radical the Bush administration’s reshaping of AIDS programs would be, or what challenges would be posed by a Republican Congress unrestrained by a Democratic White House. Almost from the outset, the Bush administration made extremely conservative appointments within agencies and at the White House, while conservative congressmen launched investigations and instigated federal audits of AIDS service providers. In relatively short order, the administration had announced its intent to reshape HIV prevention programs along more conThe fractured state of the HIV policy advocacy movement has proved disastrous during the Bush administration.

servative lines and has hinted at its intention to do the same with Ryan White CARE programs. Faced with a barrage of threats to the status quo, the community was, as previously discussed, hobbled by events that preceded the Bush administration: 1) mistrust among advo-

cates was high following the bruising 2000 Ryan White CARE Act reauthorization, 2) mechanisms for collaboration and compromise had been badly damaged, 3) most substantive HIV policy expertise was lodged within agencies with exceptionally narrow policy agendas. As a consequence, the traditional HIV advocacy community has been largely ineffective at securing access within the administration. As one informant commented: “The administration is playing us like a fiddle. They’re organizing circles around us every single day. They’re smarter than we are, they’re more effective than we are, they’re more efficient than we are, and they’re clear about what they want to do – and we are none of those things.”

PHASE II INTRODUCTION As a case study of HIV policy advocacy, the evolution of the “Global AIDS Initiative”13 provides many interesting lessons, particularly insofar as it developed almost simultaneously both in the administration and in Congress. Perhaps the most important lesson is that the emergence of global AIDS as an issue with “legs” (as they say in Washington) was the result of a confluence of factors, some purely

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circumstantial, some the culmination of a long-planned strategy on the part of advocates. For example, a small number of progressive groups (including, most importantly, the NORA International Issues Working Group [IIWG], but also a number of progressive faith-based organizations) had been working on global AIDS for some time, and this certainly set the legislative stage. The 2000 Durban AIDS Conference drew attention to the global AIDS epidemic in a way that exceeded most people’s expectations. With the leadership of Kofi Annan, UN Secretary General, and Peter Piot, Director of the Joint United Nations Programme on AIDS (UNAIDS), the global AIDS crisis emerged into the international arena, culminating in the United Nations General Assembly Special Session on HIV/AIDS (UNGASS). Then, after President Bush took office, for several reasons, the evangelical Christian movement decided that global AIDS was an issue of importance to them, and they had the ear of the president. By all accounts, Congressman Henry Hyde (who was new to the issue) and U.S. Senate Majority Leader Bill Frist (R-TN), (who was not) brought strong passion and conviction to the issue, on moral grounds. A number of very high-level Bush administration officials – including, most importantly, Colin Powell and Condoleeza Rice – took a strong interest in African affairs. Finally, again for whatever reasons (and the explanations are countless), President Bush decided that global AIDS was an issue about which he cared personally. When it emerged, those organizations that were ready or could get ready fast enough participated in the debate. As a consequence, most of the domestic AIDS establishment (including AMFAR, NMAC, NAPWA, and to a large extent, AAC) was excluded. Those domestic AIDS organizations that did play a leading role include: • AIDS Healthcare Foundation (AHF), which, unique among AIDS organizations, and with the help of paid lobbyists, developed substantial relationships among Republican members of Congress and in the administration, to advocate on behalf of issues in their interest; • The Elizabeth Glaser Pediatric AIDS Foundation (PAF), which utilized very skillful, insider lobbying techniques to advocate for their relatively narrow interests in mother-to-child transmission and family-survival programs; • The Global AIDS Alliance (GAA), which, in a very short period of time (the organization started in March 2001) mounted a relatively sophisticated, activist campaign that very effectively utilized media, policy analysis and development, demonstrations, lobbying and coalition organizing; • Health GAP, which pursued both an outsider and an insider (less successfully) strategy in the ACT UP mold, with a mix of sophisticated analysis, less sophisticated traditional lobbying and politicking, community protest, and much bravado; • The San Francisco AIDS Foundation (SFAF) and its affiliate, the Pangaea Global AIDS Foundation, which, in spite of their distance, became leading coalition players, and which both successfully exploited the remaining relationships of ex-Clinton administration staffers and engaged paid lobbyists to advocate on behalf of issues in their interest.

13 The term “Global AIDS Initiative” refers to the concurrent evolution of both the United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003 (HR1298 in the 108th Congress) and the president’s Emergency Plan for AIDS Relief.

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The Global AIDS Initiative is perhaps the only example of major AIDS-related federal policy in which AIDS organizations themselves did not assume primary leadership roles. In part, this is because global AIDS programs have historically fallen under the rubric of international development or foreign aid, for which (as with domestic AIDS programs) there exists a strong and influential body of constituent organizations with long experience advocating for their interests on Capitol Hill and within Democratic and Republican administrations. As a consequence, many development organizations from across the political spectrum exerted influence in the development of the Global AIDS Initiative, most importantly the Global Health Council (GHC), which played a strong leadership role, but also Catholic Relief Services, Church World Services, the Episcopal Church, World Vision, RESULTS, and most recently, DATA (Debt, AIDS, Trade for Africa).14

PHASE II METHOD Based upon an analysis of Phase I data, a single piece of legislation was selected to examine in closer detail Phase II as a case study: the evolution of the “Global AIDS Initiative.” The purpose of this exercise was: 1) to verify information collected in Phase I; 2) to describe in detail how advocacy efforts related to a particular issue unfolded; and 3) to assess the influence exerted by HIV public policy organizations on the emergence, evolution and resolution of a specific issue. Secondary Source Material Review. To inform the development of subsequent interviews and to

trace any official record of the influence of HIV policy advocates, relevant congressional and White House documents were reviewed, including: • All iterations of congressional bills in the 107th Congress (HR2069, S2525, and S2069) that ultimately became HR1298, the United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003 in the 108th Congress. • House and Senate markup reports and statements relating to those bills. • House and Senate Committee hearing transcripts related to these and other HIV/AIDS bills. • The Congressional Record of floor debates and amendments to relevant bills in the 107th and 108th Congresses. • White House press releases and fact sheets, transcripts of presidential speeches and news conferences, transcripts of other news conferences and speeches pertaining to the President’s Plan for Emergency AIDS Relief • Media articles pertaining to global AIDS, and to the evolution of the Global AIDS Initiative. These materials and media analyses conducted in Phase I were used to construct a chronology of events relating to the evolution of the Global AIDS Initiative (see p. 85). Primary Interviews. Primary interviews were conducted among advocates self-identified in

14 The focus of this analysis is AIDS organizations; while the efforts of other groups are frequently noted, their omission at any given point in the text should not be interpreted as a lack of involvement on their part.

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Phase I as having played a role in the development of the Global AIDS Initiative. A structured interview instrument was designed to capture: 1) subjective impressions of the motivations of members of Congress and/or administration officials to pursue the Global AIDS Initiative, 2) an assessment as to which congressional staffers and administration officials played roles in the evolution of the initiative, 3) a description of activities undertaken to influence the development of the Global AIDS Initiative, including specific congressional staffers or administration officials contacted, and 4) impressions as to the influence exerted by other non-governmental, community- or faith-based organizations or individuals. Organizations that reported global AIDS issues as a high priority during Phase I interviews were contacted for re-interviewing during Phase II. In most cases, interviews were requested with policy staff responsible for global AIDS issues, most of whom had participated in Phase I interviews. Where possible, follow-up interviews were conducted in-person on-site at the organizations’ offices. Where impractical, follow-up interviews were conducted by phone. All interviews were tape-recorded. Data gathered in Phase II follow-up interviews were used to develop a roster of congressional staffers and administration officials that played key roles in the development of the Global AIDS Initiative. Secondary Interviews. Interviews were then conducted among key players (congressional

staffers, administration officials, and other individuals) who were instrumental in the development of the Global AIDS Initiative. These key players, identified during interviews with primary sources, included: 1) staff of key members of Congress or congressional committees; 2) executive branch staff in the office of the president or relevant agencies; 3) independent operators (paid lobbyists, freelance and ad-hoc consultants15 to congressional staff); or 4) non-HIV specific organizations identified in primary interviews as having played an important role. Using information gathered from source materials, as well as follow-up interviews, a structured interview was developed to solicit information from key players concerning: 1) the chronology of events beginning in the 106th Congress and leading to the passage of HR1298 into law in the 108th Congress; 2) an assessment of which non-governmental, community- or faith-based organizations or individuals, if any, played a role during key phases of the development of the Global AIDS Initiative; and 3) impressions as to how and by whom other key players may have been influenced. Where possible, interviews were conducted in person on-site at the organizations’ offices. Where impractical, interviews were conducted by phone. All interviews were tape-recorded.

PHASE II FINDINGS On May 27, 2003, President Bush signed into law the United States Leadership Against AIDS, Tuberculosis, and Malaria Relief Act of 2003 (the “Global AIDS Bill”). The legislation envisions a

15 For the most part, these consultants comprised former congressional staff or administration officials who continued their advocacy beyond the point where their official role ended.

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dramatic escalation in the US response to the global AIDS epidemic: it authorizes $15 billion to be spent on AIDS programs over five years (almost $10 billion of which constitutes new money), including a $1 billion contribution to the Global Fund to Fight AIDS, Tuberculosis and Malaria (the “Global Fund”); it creates within the State Department an ambassador-level coordinator of US activities to combat HIV/AIDS globally and mandates that the president develop a comprehensive five-year plan for global HIV/AIDS programs; it sharply expands US bilateral HIV/AIDS prevention and care programs; and it urges the Secretary of the Treasury to negotiate expanded benefits available to resource-poor countries through the Heavily Indebted Poor Country Initiative. BACKGROUND: THE 106TH CONGRESS

While the speed with which the Global AIDS Bill was signed into law was breathtaking, the bill had evolved through many iterations dating back to the 106th Congress.

While the speed with which the Global AIDS Bill was signed into law was breathtaking – just over 10 weeks elapsed between the time the bill was introduced in the 108th Congress until it was signed into law – in truth the bill had evolved through many iterations dating back to the 106th Congress. In the House, Congresswoman Barbara Lee (D-Calif.) assumed an early leadership role with her introduction of the AIDS Marshall Plan Fund for Africa Act on August 5, 1999 (HR2567) during the 106th

Congress. Rep. Lee’s legislation was the first to envision a multilateral AIDS fund – an idea that she attributes to her predecessor, former Congressman Ron Dellums. The AIDS Marshall Plan Fund for Africa Act provided for the establishment of a new corporation (modeled on the Overseas Private Investment Corporation) to finance AIDS research, prevention and treatment activities in Africa, with support from governments (in particular G-8 country governments) and private contributions. During this time, Rep. Lee’s staff report working more closely with progressive African-American groups (such as the Rainbow PUSH Coalition) than with AIDS groups, with the exception of AIDS Action Council (AAC), then headed by Daniel Zingale. They credit AAC with helping, at that time, to broaden the discussion of global AIDS to a larger AIDS network. Traditional development groups – including the GHC – were taken off guard by Rep. Lee’s legislation and were initially very skeptical, worried that a multilateral fund might divert resources from already poorly funded bilateral programs. “It really started the debate – it made those of us who had previously just been looking at funding levels realize, ‘we really need to start looking at policy, as well,’” commented one advocate. The following year, the idea of a multilateral AIDS fund formed the basis of the World Bank AIDS Prevention Trust Fund Act (HR3519), introduced on January 24, 2000, by Rep. Jim Leach (R-Iowa) with 30 co-sponsors, including Rep. Lee. Rep. Leach’s legislation, which essentially located the multilateral AIDS fund envisioned by Rep. Lee within already existing institutions, was passed by the House with minor amendments and sent to the Senate on May 16, 2000, where it was referred to the Senate Foreign Relations Committee (SFRC), chaired by Sen. Jesse Helms (R-N.C.). In the Senate, Sen. Helms had already introduced, on April 7, 2000, an enormous omnibus foreign relations authorization bill (S2382), which incorporated numerous authorities and which subsumed,

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intact or in part, a variety of previously introduced AIDS bills, including: • The International Tuberculosis Control Act of 1999 (S1497), introduced by Sen. Barbara Boxer (DCalif.) on August 4, 1999 with two co-sponsors (Senators Frank Lautenberg, (D-N.J.), Gordon Smith (R-Ore.)), to address the international problem of tuberculosis. • The Lifesaving Vaccine Technology Act of 1999 (S1718), introduced by Sen. John Kerry (DMass.) on October 12, 1999 with five co-sponsors (Senators Boxer, Dianne Feinstein (D-Calif.), Charles Schumer (D-N.Y.), Richard Durbin (D-Ill.), and Patty Murray (D-Wash.), which provided tax credits for medical research related to vaccines. • The Global AIDS Prevention Act of 2000 (S2026), introduced by Sen. Boxer on February 2, 2000 with six co-sponsors (Senators Feinstein, Kerry, Carl Levin (D-Mich.), Edward Kennedy (DMass.), Patrick Leahy (D-Vt.) and Smith), to authorize appropriations for HIV/AIDS efforts in Africa. • The World Bank AIDS Prevention Trust Fund Act (S2033), introduced by Sen. Kerry on February 3, 2000 with three co-sponsors (Senators Durbin, Feinstein, and Kennedy), which mirrored the provisions of H3519, which would soon be passed in the House. • The AIDS Orphans Relief Act of 2000 (S2030), introduced by Sen. Durbin and Sen. Kerry on February 3, 2000, to authorize microfinance and food assistance for communities affected by AIDS. • The Mother-to-Child HIV Prevention Act of 2000 (S2032), introduced by the late Sen. Daniel Patrick Moynihan (D-N.Y.) on February 3, 2000, with three co-sponsors (Senators Durbin, Levin, and Russ Feingold (D-Wis.)), to address mother-to-child HIV transmission in Africa, Asia, and Latin America. • The Vaccines for the New Millenium Act of 2000 (S2132), introduced by Sen. Kerry on March 1, 2000, with three co-sponsors (Senators Bill Frist (R-Tenn.), Leahy, and Patty Murray), to create incentives for private sector research related to developing vaccines against widespread diseases and to ensure that such vaccines are affordable and widely distributed. Advocacy on these bills and on global AIDS issues in general, was modest – international issues had never before been a priority for domestic AIDS organizations. What advocacy there was was coordinated largely through IIWG, co-chaired by GHC and the Global AIDS Action Network, among the earliest agencies to focus on the global AIDS issue. Other members included the SFAF and PAF. One congressional aide, commenting on the early development of the World Bank AIDS Trust Fund, reflected: “There wasn’t so much community involvement at the authorizing stage – later, in the appropriations stage, we pulled the community groups in. [We did] lots of work to reach out to domestic AIDS organizations to get them more interested in international issues. There was initially a lot of resistance from traditional international organizations – like the GHC, and a whole other list of folks – they didn’t know whether to subscribe to this new way of thinking of public-private partnerships, in a global sense, that was truly multilateral… There was initially concern that pushing a multilateral approach would undercut our bilateral approach. People who received USAID money and do

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advocacy for bilateral stuff were initially really against this idea. Way back then – a lot of folks were squeamish about these issues. Health GAP was an early ally. Also the people at RESULTS, Church World Services and the Episcopal Church. They were the core group of people that [congressional staff] met with to push these issues forward. Once the issue was out there, then other groups (like ADNA [the Advocacy Network for Africa]) began talking about it, so there was more healthy debate. We used some of their concerns about bilateral programs to integrate both – so that it was a bilateral and multilateral approach, ramping up money for all of it, [and] suggesting higher dollar amounts.” Later that year, the International AIDS Conference, held in Durban, South Africa, from July 9-14, 2000, drew unprecedented attention to the global AIDS epidemic, helping to spark a dramatic escalation in global AIDS advocacy. On July 11, 2000, while the Durban conference was underway, Sen. Helms reintroduced the AIDS and tuberculosis sections of the omnibus bill as a stand-alone bill, the Global AIDS and Tuberculosis Relief Act of 2000 (S2845). This new bill formed the basis of a substitute amendment when the World Bank AIDS Prevention Trust Fund Act (HR3519), which had previously passed the House, was considered by the Senate on July 26, 2000. In his remarks on the Senate floor, Sen. Helms noted: “Mr. President, passage of the Global AIDS and Tuberculosis Relief Act is a priority for this administration, but that is not why I support it. I am aware of the calamity inflicted by HIV/AIDS on many Third World countries, particularly in Africa. Children are the hardest hit and they, Mr. President, are the innocent victims of this sexually transmitted disease. In fact, the official estimate of 28 million children orphaned in Africa alone could easily prove to be a low estimate. This is among the reasons why Senator Bill Frist wrote the pending amendment, which is based on S. 2845, with solid advice from and by Franklin Graham, president of Samaritan's Purse and son of Billy and Ruth. That is why I support it.” The bill passed the Senate that same day. The next day it was passed by the House, and on August 19, 2000, President Bill Clinton signed it into law. The AIDS advocacy community was stunned. One international advocate remarked, “I think it took people by surprise – people were just shocked that he [Helms] did it. We worked very closely with [members of the IIWG]. This was a nascent effort – we realized at that point that we really had to pull ourselves together for the 107th Congress.” When the 106th Congress drew to a close in November, a total of $20 million had been appropriated to the World Bank AIDS Trust Fund. THE 107TH CONGRESS – 1ST SESSION

Early in the 107th Congress – in the first months of the Bush administration – there were signs that global AIDS was to become a larger issue. On March 6, 2001, Sen. Feinstein introduced the Global Access to AIDS Treatment Act of 2001 (S463) with three co-sponsors (Senators Feingold, Schumer, and Daniel K. Inouye (D-Hawaii), which declared that as a matter of policy, the U.S. would not seek to reverse intellectual property or competition laws that regulate pharmaceuticals used to treat HIV/AIDS in any foreign country undergoing an HIV/AIDS crisis. Rep. Lee introduced the Debt Cancellation for HIV/AIDS Act (HR1567) on April 24, 2001, with 14 co-sponsors, to provide for multilateral debt cancellation for countries eligible to be considered for assistance under the Heavily Indebted Poor Countries Initiative or heavily affected by HIV/AIDS.

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On April 26, 2001, United Nations Secretary General Kofi Annan called publicly for a $7-$10 billion “global superfund” to subsidize the cost of HIV prevention, care and antiretroviral treatment in Africa, essentially appropriating an idea that Rep. Lee had proposed two years earlier. Rep. Lee would continue to exert enormous leadership throughout the development of the Global AIDS Bill. With a seat on both the House Financial Services and International Relations Committees, as well as her membership in the Congressional Black Caucus, Rep. Lee was in a position to participate in virtually any global AIDS proposal that might gain traction. Rep. Lee’s staff – particularly senior legislative assistant Michael Riggs – met routinely with advocates. These meetings served as an early focal point for international AIDS advocates, particularly progressive ones: Health GAP, Church World Services, RESULTS, the Episcopal Church, Jubilee USA, and PAF. Rep. Henry Hyde, who assumed the chair of the House International Relations Committee (HIRC) in January 2001, was persuaded as early as February of that year to introduce a global AIDS bill. “Hyde views AIDS as a modern day plague – and he appreciates that approaches to deal with it vary greatly,” said one Hyde staffer. (HIRC staff had traveled to Africa the previous year, which may have spurred their interest in pushing for a bill.) On June 6, 2001, Henry Hyde introduced the Global Access to HIV/AIDS Prevention, Awareness, Education, and Treatment Act of 2001 (HR2069, aka the “Hyde Bill”) with 21 co-sponsors. Though originally only seven pages long, HR2069 would serve

On June 6, 2001, Henry Hyde introduced the Global Access to HIV/AIDS Prevention, Awareness, Education, and Treatment Act of 2001 with 21 co-sponsors. Though only seven pages long, HR2069 would serve as the vehicle for what ultimately became the Global AIDS Bill.

as the vehicle for what ultimately became the Global AIDS Bill. Its provisions included a significant enhancement of USAID prevention, education and care programs, in addition to authorizing contributions to a multilateral “Global Fund” for AIDS. Notably, it included a $50 million pilot program to provide antiretroviral (ARV) therapy – a concept that, at the time, was controversial among the traditional development community, which feared that Africa lacked the infrastructure to support such complex treatments, and that their cost would overwhelm other needs. Hyde’s staff claims to have written the bill with no input from the non-governmental organization (NGO) community, a claim that is consistent with most, but not all, NGO reports. “Most advocates were shocked and surprised,” remarked one global AIDS advocate. But in a post to an on-line bulletin board the same day as the bill was introduced, Health GAP notes: “One welcome result of Health GAP and allied groups’ negotiations with Republican and Democratic House IR [international relations] staff was an overall increase, plus a doubling of the funds intended for treatment. There is now $50M explicitly for drug purchases and delivery.” Moreover, in convening June 7, 2000, hearings, Hyde remarked, “I wish to thank the many organizations that have assisted us in drafting legislation to authorize bilateral HIV/AIDS programs… I am appreciative of the contributions of Opportunities International [sic, it should be Opportunity International], the Foundation for Community Assistance, and Log Cabin Republicans.” What role Log Cabin Republicans played is not clear. While AHF doesn’t take credit for the $50

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million pilot treatment program (they say their advocacy began after the bill was introduced), it is wholly consistent with their (then relatively unique) position that USAID should support ARV treatment programs. (AHF says that their interest, in contrast with many early global AIDS advocates, was primarily in US bilateral programs.) What became clear was that USAID was going to require some persuading. At the hearings, USAID Administrator Andrew Natsios testified: “People do not know what watches and clocks are. They do not use Western means for telling the time. They use the sun. These drugs have to be administered during a certain sequence of time during the day. And when you say, ‘take it at ten o’clock,’ people will say ‘what do you mean ten o’clock?’ They “There wasn’t anybody out there in the establishment, or within any of the other AIDS organizations, who was willing to go out on a limb and be as provocative as Dr. Zeitz was.”

don’t use those terms in the villages to describe time. They describe morning and afternoon and evening. So that’s a problem.” Ironically, Natsios’ (now infamous) testimony served to enhance Rep. Hyde’s commitment to treatment. One HIRC staffer remarked: “After the Natsios debacle, Hyde was very motivated in not having that be the last word – he felt like USAID had to respond positively.” Traditional development advocates would also require

some persuading: “We were shocked to see it in there. That had to have come from AHF’s advocacy with the Republicans. And people like [Health GAP] were always pushing the treatment issue. And while [mainstream AIDS and development] organizations came around to support it, there was initially a lot of concern, because it wasn’t clear how the drugs would be delivered, how they would be paid for, or whether they would be generics. And people were concerned that it was basically a $50 million check to [the pharmaceutical industry].” But in fact, one HIRC majority staffer noted that early in the debate, “the pharmaceutical companies were not terribly helpful,” suggesting that the industry – worried about the possibility of generics – wasn’t all that enthusiastic either. While what advocacy occurred prior to the introduction of the Hyde bill may be unclear, following its introduction many advocacy groups contributed to the debate. Among AIDS advocates, the groups fell into three main camps: 1) traditional global AIDS advocates, represented by IIWG; 2) Health GAP, Global AIDS Alliance and a coalition of progressive development organizations including the Episcopal Church, RESULTS, Church World Services, and World Vision; and 3) AHF. HIRC minority staff was adamant that the bill was unacceptable as written and demanded compromise. They also sought immediately to involve the NGO community. Both the HIRC majority and minority staff were clearly comfortable with IIWG. One majority staffer remarked on the IIWG’s capacity to broker compromises. “Certainly Global Health Council was only helpful in trying to achieve consensus.” A minority staffer concurred: “GHC was my interlocutor to the NGO community.” This insider role was acknowledged by one IIWG member: “There’re kind of two camps in the global HIV advocacy community: there are the ‘activists,’ who want ‘more money, more money, more money,’ [who] are not too worried about the details of it, and are not as substantive about it… then there are the ‘advocates.’ I would put [Health GAP] and [GAA] in the activist column. [The

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activists] are not always so good at follow-up. But they were there – people had to listen to them – and they had Michael Riggs’ ear [in Rep. Lee’s office].” In fact, Rep. Lee, who remained extremely influential, had a very close relationship with GAA and was instrumental in securing a last-minute slot for GAA Executive Director Paul Zeitz to testify at HIRC hearings. (Rep. Lee’s staff helped to organize GAA, and former Lee staffer Michael Michael Riggs now serves on GAA’s board of directors – and Rep. Lee served, along with her predecessor Ron Dellums, on GAA’s Leadership Council.) One aide remarked: “There wasn’t anybody out there in the establishment, or within any of the other AIDS organizations, who was willing to go out on a limb and be as provocative as Dr. Zeitz was.” Rep. Lee was primarily committed to securing a high authorization for a multilateral fund – a position strongly supported by GAA and Health GAP. Early on, skepticism about the Global Fund was widespread, though much more among traditional development advocates than among AIDS advocates. Many development groups were not sure what to make of the Global Fund and were defensive about bilateral programs: “Some groups say ‘the answer is the Global Fund, you have to give money to the

While congressional staff perhaps did not appreciate the activists, their advocacy clearly paid off. In the markup of HR2069, $750 million was authorized for the US contribution to the Global Fund, the high water mark for an institution that did not yet even exist.

Global Fund, and the bilateral programs suck.’ Early on, the people who were very strong global advocates – [Health GAP], the ADNA groups, [GAA], were actually saying ‘the bilateral programs don’t work.’ Their argument was that it takes so long for the bilateral programs to get the money out, and the Global Fund was going to get it out ‘right now,’ and it was going to be treatment.” Members of Congress were skeptical as well. One HIRC staff member remarked, “There was initially a lot of skepticism about the Global Fund, not exactly opposition. When will it be up and running? How much could they possibly program? Did we want to put that much emphasis on it before we knew how it was going to work? There was a lot of political pressure that if we [the United States] didn’t put support behind the [Global] Fund, then it would never get off the ground. Appropriators and authorizers were both skeptical; they felt like their necks were on the line. It’s a big chunk of money that we were pushing – if the [Global] Fund didn’t show results, show that [it was] actually making grants, then it would be very hard to go back and argue for more money later.” Neither Health GAP nor GAA was troubled by such concerns. In his testimony, Zeitz called for an immediate US contribution to the global fund of $3 billion. While the HIRC majority staff also report hearing from Health GAP and GAA, they were less enthusiastic. One staffer remarked: “Their positions are so clear: You can never do enough.” Another commented about [Health GAP]: “[They’re] like stone chuckers – [they’ll] throw rocks through my window and then want to come in and meet. They throw around such huge numbers, then bitch and complain, that they lose credibility. Throwing grenades is counter-productive.” But while congressional staff perhaps did not appreciate the activists, their advocacy clearly paid off. In the

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markup of HR2069, $750 million was authorized for the US contribution to the Global Fund, the high water mark for an institution that did not yet even exist. The HIRC majority staff relationship with AHF was obviously warmer – as one aide remarked: “I talked to [AHF] quite a bit – [they were] instrumental.” In particular, HIRC majority staff cited AHF’s expertise and interest in treatment: “Their only concern was treatment. AHF were pioneers in treatment and they sought to export their expertise overseas… they were the only people who talked about treatment.” AHF also enjoyed a good relationship with Rep. Lee, who had traveled as their guest to the opening of a new AHF clinic in Uganda. AHF’s early advocacy paid off – in the HR2069 markup report, “the administrator of USAID is urged to coordinate the provision of assistance with entities such as the AIDS Healthcare Foundation, which demonstrate expertise in building and operating infrastructure for the delivery of antiviral HIV medical care to the medically indigent, as well as training of medical staff experienced in medical care.” By the time HR2069 passed the House of Representatives by a voice vote on December 11, 2001, Rep. Hyde’s support for ARV treatment was firm. In his remarks on the floor of the House, Hyde commented: “The novel bilateral treatment program that my bill authorizes is vitally important, for it gives hope to those already suffering from AIDS. By authorizing a pilot treatment program, we can work to extend the productive lives of those infected by the virus. This is not only the right thing to do, it has beneficial impact on treatment as well. Without some expectation of care, the poor have little reason to be tested for AIDS or to seek help. I am fully cognizant of the challenge posed by treatment programs in developing countries. However, it is my hope that successful treatment programs such as those carried out by the AIDS Healthcare Foundation will be replicated in developing countries. Madam Speaker, there simply is no option other than treatment if we are ever to stem the tide of this pandemic.” While Rep. Hyde had successfully steered his legislation through passage on the House floor without amendment, other members’ remarks foreshadowed controversies that would arise in future consideration of the Global AIDS Bill. In particular, Rep. Dave Weldon (R-Fla.) noted: “I do remain concerned, Madam Speaker, that the bill does not sufficiently stress abstinence. Abstinence programs have shown to be helpful in Uganda and Senegal; and abstinence, of course, is the only approach that actually guarantees that AIDS will not be spread. I have served in the past on the board of a faith-based group that has worked in Nigeria on abstinence-based education. I think the bill, as it moves through the conference process and gets signed by the president, should have some stronger language inserted to deal with the importance of abstinence. Also, I would like to see the makeup of the board, the advisory board, structured in such a way that faith-based organizations will be guaranteed a place at the table. There are currently hundreds of faith-based organizations in Africa. As I said, I have worked with one of them firsthand. They need to be included in this process.” It must be noted that throughout 2001, in addition to stewarding HR2069 through the House, there were many competing priorities for the advocacy community. On May 11, 2001, President Bush

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announced the first $200 million contribution to the Global Fund, a contribution that was roundly criticized by advocates (including PAF board chair and Yale University dean of medicine David Kessler) as inadequate. Sen. Bill Frist, the only physician in the Senate, introduced the International Infectious Diseases Control Act of 2001 (S1032) on June 14, 2001, with eight co-sponsors (including influential Senators Helms, Mike DeWine (R-Ohio), Kerry and Durbin), to direct the president to negotiate to establish the Global Fund (and repeal the World Bank AIDS Trust Fund). UNGASS was convened on June 25, 2001. Sen. Frist introduced the GLIDER (Global Leadership in Developing the Expanded Response) Act on July 24, 2001, with two co-sponsors (Senators Hillary Rodham Clinton (D-N.Y.), and Gordon Smith (R-Ore.) to provide authorization for global AIDS activities at the Departments of State and Health and Human Services. And numerous appropriations bills – including both FY02 Foreign Operations bills and a $6.5 billion supplemental appropriations bill, all with allocations for the Global Fund – wound their way through the usual processes, with the usual Washington intrigue. On September 11, 2001, the terrorist attacks in New York City and Washington, D.C. diverted the nation’s attention. On November 30, 2001, Sen. Jon Corzine (D-N.J.) introduced the Microbicide Development Act of 2001 (S1752) with 10 co-sponsors, to facilitate the development of microbicides for preventing transmission of HIV and other sexually transmitted diseases infections. Throughout 2001, many activists understandably focused the bulk of their efforts on appropriations bills – which represented real money. For example, in November 2001, Health GAP and GAA helped to coordinate a letter drafted by Reps. Lee and Leahy (and signed by 70 members of Congress, 130 non-governmental organizations, and 35 pop stars) asking the Bush administration to contribute $1.2 billion to the Global Fund. (The President’s FY03 budget would include a $300 million contribution.) As one advocate noted of HR2069, the Hyde bill, “At the time, it wasn’t at all clear that this was the bill.” By the time HR2069 was received in the Senate on December 12, 2001 and referred to the Foreign Relations Committee, it had become clear that the Senate would follow suit with its own global AIDS bill, drafted by Senators Kerry and Frist. On November 14, 2001, the two Senators had announced that they would co-chair a bipartisan task force on HIV/AIDS convened through the Center for Strategic and International Studies (CSIS), and that global AIDS hearings postponed because of 9/11 events would be convened by the Senate Foreign Relations Committee (SFRC) in 2002. Working with the CSIS Task Force, Senators Kerry and Frist began drafting what would ultimately become the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2002. THE 107TH CONGRESS – 2ND SESSION

Between sessions, Sen. Frist again traveled to Africa to visit HIV programs. Early in the second session of the 107th Congress, on February 13-14, 2002, the SFRC conducted hearings on the global HIV epidemic, at which Under Secretary of State for Global Affairs Paula Dobriansky, HHS Secretary Tommy Thompson, UNAIDS Director Peter Piot, and CSIS Task Force on HIV/AIDS Committee Chair Princeton Lyman offered testimony.

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During this time, what would become the Kerry/Frist bill (S2525) was drafted in large part by SFRC staff with minimal input from the NGO community. SFRC staff did participate in a number of meetings or conference calls with IIWG members, coordinated through GHC. Among those in attendance at these meetings were GHC, PAF, SFAF, and the Sheridan Group (representing SFAF). It appears that GAA and Health GAP were largely, though not entirely, excluded from this process, though SFRC staff says they talked both to GAA and Health GAP. AHF also reports that, despite repeated efforts, they too failed to meet with SFRC staff “until late in the game.” On February 13, 2002, Sen. Durbin introduced the Global CARE (Coordination of HIV/AIDS Response) Act (S1936), which provided broad authorities for HHS agencies to undertake global HIV activities. Later in February, Samaritan’s Purse, the evangelical Christian organization run by Franklin Graham convened Prescription for Hope: The International Christian Conference on HIV/AIDS. Featured speakers included USAID Administrator Andrew Natsios, Sen. Bill Frist, and Sen. Jesse Helms, who told participants that he was “ashamed” that he had not done more to fight AIDS earlier. (Samaritan’s Purse runs HIV/AIDS programs in 18 countries.) On March 15, 2002, U-2 singer Bono met with Senators Frist, DeWine, Rick Santorum (R-Pa.) and Helms to discuss global AIDS. On March 25, 2002, in an Op-Ed in the Washington Post, Helms wrote: “It is my intent to offer an amendment with Sen. Bill Frist to the emergency supplemental appropriations bill to add $500 million – contingent on dollar-for-dollar contributions from the private sector – to the U.S. Agency for International Development’s programs to fight the HIV-AIDS pandemic.” That same day, the Student Global AIDS Campaign demonstrated in Sen. Kerry’s office to demand that a $2.5 billion US contribution to the Global AIDS fund be included in the global AIDS bill he was said to be drafting. On April 10, 2002, a large rally, A Day of Hope: Fight AIDS in Africa and Worldwide, was held in Washington, sponsored by Health GAP, ACT UP/New York, ACT UP/Philadelphia, Jubilee USA, and Artists for a New South Africa (an organization founded by actor Danny Glover and others). Rally organizers demanded $750 million in supplemental appropriations and $2.5 billion in FY03 global AIDS spending. The next day, on April 11, 2002, the Senate Committee on Health, Education, Labor and Pensions (HELP) convened hearings, Capacity to Care: In a World Living with AIDS. Witnesses included Sir Elton John; Sandra Thurman, International AIDS Trust (and ex-Director, Office of National AIDS Policy in the Clinton administration); Peter Mugyenyi, Joint Clinical Research Center, Kampala, Uganda; Allan Rosenfield, Columbia University; and Deborah Dortzbach, international director, HIV/ AIDS Programs, World Relief International. At the hearings, Sen. Kennedy announced his intention to offer companion legislation to the SFRC bill being drafted by Sen. Kerry. In testimony, Thurman and Rosenfield offered recommendations (particularly with respect to mother-to-child transmission [MCT] programs) that very closely mirrored those adopted by Kennedy in the bill he would introduce with Sen. Frist three months hence. With Sen. Kerry’s office largely closed off, advocacy groups turned to other SFRC members, including Sen. Frist, in an effort to influence the Kerry/Frist bill’s provisions. AHF, GAA, and IIWG members claim to have met with Sen. Frist’s staff, and both GAA and PAF also report successful meetings with Sen. Helms’ staff. Helms (ranking minority member of the Foreign Relations

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Committee), in light of his previous commitment to seek $500 million for MCT programs, was particularly interested in ensuring that any bill addressed the concerns of MCT providers – including PAF. PAF also reportedly has very good relationships with S2525 co-sponsors Senators Christopher Dodd (D-Conn.) and DeWine (who both served in 2002 as co-chairs of PAF’s annual dinner). On May 15, 2002, Sen. Kerry did indeed introduce the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2002 (S2525, the Kerry/Frist bill) with 17 co-sponsors. S2525 directed the president to develop a five-year strategic plan, provided for an HIV/AIDS response coordinator at the Department of State, and authorized a $1 billion contribution to the Global Fund, as well as $800 million for HIV programs, $150 million for TB programs, and $70 million for malaria programs administered through USAID. SFRC staff say that the breadth of the bill accommodated various interests of SFRC members: ARV treatment provisions were of particular interest to Senators Feingold and Frist; a report on the exodus of healthcare workers from Africa, to Sen. Tom Daschle (D-S.D.); TB programs, to Sen. Boxer; microbicides, to Sen. Corzine; and a robust contribution to the Global Fund, to Sen. Durbin. To the extent that advocates may have been unsuccessful at providing input to Sen. Kerry’s office directly, they may have succeeded through other members. On June 13, 2002, the CSIS Task Force on HIV/AIDS convened to discuss global AIDS issues; panelists included Richard Feachem, Director of the Global Fund, Peter Piot, Director of

On March 25, 2002, in an Op-Ed in the Washington Post, Helms wrote: “It is my intent to offer an amendment with Sen. Bill Frist to the emergency supplemental appropriations bill to add $500 million – contingent on dollarfor-dollar contributions from the private sector – to the U.S. Agency for International Development’s programs to fight the HIV-AIDS pandemic.”

UNAIDS, and Ayanda Ntsaluba, South African Health Director General. In his opening remarks, Sen. Kerry noted: “The work of the Task Force and all of its working groups have been very important to us in helping to pull that bill [S2525] together. It is not just a congressional concept. I think it is a translation of much of what is in The Call to Action, and it’s a translation of much of what you’ve been able to suggest to us over the course of these past weeks.” At the meeting, Nils Daulaire (GHC Executive Director), Eric Goosby (SFAF Pangaea Global AIDS Foundation Chief Executive Officer and ex-Director of HHS’ AIDS Policy Office), and David Gold (International AIDS Vaccine Initiative) offered comments. The next day, S2525 was marked up without amendment. On June 19, 2002, President Bush announced a three-year, $500 million international HIV/AIDS initiative focused on preventing mother-to-child transmission of HIV in Africa and the Caribbean. PAF says that they “worked closely” with the administration on the development of the program. That same day, Sen. Kennedy introduced the International AIDS Treatment and Prevention Act of 2002 (S2649, the Kennedy/Frist bill) with 17 co-sponsors, which provided HHS agencies with broad authorities to undertake AIDS activities internationally. Support for the Kennedy/Frist bill among AIDS advocates was mixed. The more activist organizations ignored it, thinking both that it was “too incremental,” and because it dealt exclusively with bilateral programming, which they felt

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was “irrelevant.” Others were interested in securing additional authorities at HHS, particularly because the agency had treatment expertise, and USAID had been so cool to the idea of treatment programs. Agencies like PAF were clearly concerned that the legislation be written in such a way that their MCT programs would qualify for funding. There was reportedly interagency competition, as well. At every point in the evolution of the Global AIDS Bill, and earlier with the president’s MCT initiative, there were widespread rumors of nasty jurisdictional fights between USAID and various HHS agencies, primarily CDC, HRSA, and the National Institute of Allergy and Infectious Diseases (NIAID). One advocate commented: “This was around the time that HRSA was trying to get its authority as well. And people were fighting that, you know? As of June 2002, development of the president’s initiative – the Emergency Plan for AIDS Relief, which wouldn’t be announced until January 2003 – was underway. The process would take approximately seven months, would be relatively secretive, and would involve many different players in the White House and at various agencies, including the State Department, HHS, the National Security Council, the Domestic Policy Council, and the Office of Management and Budget.

‘They can’t do Ryan White – how can they do global stuff?’” S2649 was marked up on July 3, 2002 with only minor amendments. On July 15, 2002, the Senate unexpectedly took up consideration of HR2069, the Hyde Bill. In a series of three brief votes, the Senate substituted S2525 (the Kerry/Frist bill) and S2649 (the Kennedy/Frist bill) for HR2069 in its entirety and passed the bill by unanimous consent. Perhaps as a signal of the broader interest in the Global AIDS Initiative that was to come, Sen. Santorum, chairman of the Republican Conference, remarked: “This is a very important piece of legislation for the continent of Africa and has to do with AIDS relief, tuberculosis, and other infectious diseases. There is a provision in this legislation that Senator (Joe) Biden (D-Del.) and I have offered on debt relief for Third

World countries. This is a vitally important piece of legislation that dovetails very well with the president’s initiative in trying to stem the scourge of AIDS in Africa and provide some hope for some of these heavily debt ridden countries.” Many advocates report that Sen. Santorum had been involved in the development of the Global AIDS Bill (he cosponsored both S2525 and S2649), though he sat on neither SFRC nor HELP. As chairman of the Republican Conference, however, Sen. Santorum could be expected to be attuned to the party’s political fortunes. By all accounts, and as he mentions, Sen. Santorum had a particular interest in debt-relief, which he would continue to pursue in subsequent iterations of the bill. AHF reports meeting routinely with Sen. Santorum’s Republican Conference staff, which in turn indicated that it had been hearing from the faith-based community (in particular, from evangelical Christian groups) about the need to address global AIDS. AHF reports that Republican Conference and Bush administration representatives attended a May, 2002 awards luncheon for Ugandan First Lady Janet Museveni, which they sponsored in collaboration with AAC and the Ugandan Business Coalition on HIV/AIDS. (Before the luncheon, Museveni had joined other abstinence advocates in protesting the United Nations’ policy of supplying condoms to youth in Africa.) It was not the only

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time that the interests of AAC and AHF would coincide. As of June 2002, development of the president’s initiative – the Emergency Plan for AIDS Relief, which wouldn’t be announced until January 2003 – was underway. The process would take approximately seven months, would be relatively secretive, and would involve many different players in the White House and at various agencies, including the State Department, HHS, the National Security Council, the Domestic Policy Council, and the Office of Management and Budget (OMB), including: • Anthony Fauci (NIAID Director) and his assistant director for medical staff affairs Mark Dybold, played a key role in the development of the technical aspects of the initiative. • Josh Bolton (then assistant to the president and deputy chief of staff for policy, now OMB Director) and Jay Lefkowitz (deputy assistant to the president for domestic policy) clearly helped to steward the initiative through OMB, and brokered competing agencies of the federal government. • Robin Cleveland, associate director, National Security and International Affairs, OMB. • Joseph O’Neill, as of July 22, 2002, director, Office of National AIDS Policy (now medical director, Office of the HIV/AIDS response coordinator, Department of State). • HHS Secretary Tommy Thompson, both personally and through his director, Office of Global Health Affairs William Steiger, chief of staff Robert Wood, and deputy chief of staff (now special assistant to the president for domestic policy) Terrell Halaska, advocated for a role for HHS. • Condoleeza Rice, director of national security, through Jendayi Fraser, special assistant to the president and senior director, African Affairs, National Security Council. • Colin Powell, secretary of state, through Jack Chow, deputy assistant secretary and special representative of the secretary for HIV/AIDS (now at the World Health Organization). In April, HHS Secretary Thompson had traveled to Africa with other administration officials, including NIAID Director Fauci. Advocates who have met with him say that Thompson clearly trusts Fauci – just as he distrusts CDC – and at the president’s behest, tapped him to help develop the new initiative. By June, when the president announced his MCT initiative, Fauci (staffed by Dybold) reportedly was already preparing options for a broader initiative that would expand upon the MCT model of networked providers in the same 14 countries in Africa and the Caribbean. Fauci’s work was being coordinated with Josh Bolton, one of two deputies reporting to the president’s chief of staff, Andrew Card. While Bolton himself met with few outsiders, he relied in part on Office of National AIDS Policy director Joe O’Neill to assist him in (quietly) soliciting input from outside the administration. By September or October, the buzz about a White House initiative had grown more persistent – advocates report being advised by Hill staff, “something was happening, and that OMB (specifically Robin Cleveland) really needed to be educated.” A few people apparently spoke with Cleveland, including GHC’s Nils Daulaire (who reportedly had “a few very long meetings with her, just talking, ‘what are the issues related to AIDS?’”) and GAA, who reports: “They [OMB] said, ‘Look guys, it’s not about if any more, it’s about what.’ The economist said they were trying to figure out how much to spend, and we had done a report on an equitable contribution framework, saying that countries

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should pay their fair share according to their relative wealth, and he said to me, ‘we used your [report]… we did a sensitivity analysis and used that [GAA’s] as a high end and used the UN contribution figure as a low end.’” Other advocates attribute the $15 billion figure that would later figure in the president’s proposal to GHC: “[GHC] got from UNAIDS this project that apportioned ‘fair and reasonable’ contributions from countries to do a big AIDS initiative – that’s where the $15 billion came from. The president saw that analysis and picked one of the higher numbers.” GAA’s meeting with OMB was coordinated through an activist campaign that had begun as far back as August 2002, when Health GAP and GAA decided, in coalition with other progressive partners, to press for a major, ‘Presidential Global AIDS Initiative’ prior to Bush’s first visit to Africa, then scheduled for January 2003. By November, the group had developed a platform, Saving Families and Communities: A Proposal for a US Presidential Global AIDS Initiative. The platform had three components: • Ensuring access to affordable medication, which called for “an equitable percentage” of a global plan to provide ARV treatment to three million people by 2005, as well as limited exceptions to international patent rules to permit the use of generic drugs; • Ensuring prevention services and support for affected communities, which called for the US, by 2005, to commit to: 1) providing treatment to 80% of the estimated 2 million HIV-positive women who give birth annually to prevent mother-to-child transmission and to treat the mother’s HIV infection; 2) making a fair-share contribution to HIV prevention programs; and 3) providing care and support for 80% of children orphaned by AIDS; • Ensuring adequate financial resources, including a $2.5 annual commitment to global AIDS activities, 50% of which should be allocated to the Global Fund. Administration officials deny, rather too strenuously, that the platform or the protests – or their primary organizers, ACT UP/ Philadelphia, Health GAP and GAA – had any influence on the development of the president’s Emergency Plan for AIDS Relief, suggesting that the primary impetus was the president himself.

The platform was signed by 77 national organizations (which, interestingly, included neither AHF, nor GHC, nor PAF, nor SFAF/ Pangaea), as well as numerous regional and international organizations. Health GAP says it coordinated many meetings with administration officials – including O’Neill and Fauci – during the fall of 2002, to push the platform. On November 26, 2002, AIDS activists marched through the streets of Washington, D.C. – organized by Health GAP, ACT UP/New York, and ACT UP/Philadelphia – demanding that the Bush administration commit $2.5 billion to global AIDS. Administration officials deny, rather too strenuously, that the platform or the protests – or their primary organizers, ACT UP/

Philadelphia, Health GAP and GAA – had any influence on the development of the president’s Emergency Plan for AIDS Relief, suggesting that the primary impetus was the president himself. But it was obvious that the administration, well-known for its prickly response to criticism, was still smarting from the ‘rude’ reception Secretary Thompson received at the International Conference on AIDS in Barcelona, in July 2002, where activists had drowned out his address with jeers and whistles,

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carrying signs that read, “Wanted: Bush and Thompson for murder and neglect of people with AIDS.” And in September 2002, Office of National AIDS Policy Director Joe O’Neill was ‘booed and jeered’ during his prepared remarks at the United States Conference on AIDS, as he spoke about Bush administration support for abstinence-only education programs and opposition to federallyfunded needle-exchange. But as clear as it was that the administration did not appreciate criticism, it did solicit outside input from AIDS experts. At a White House meeting in November, top Bush administration officials (including Bolton, Lefkowitz, O’Neill, and Cleveland) met with a number of international health experts, including: Paul Farmer, Partners in Health; Jean Pape, Les Centres GHESKIO (Groupe Haitien d’Étude du Sarcome de Kaposi et des infections Opportunistes); Eric Goosby, Pangaea Global AIDS Foundation; Nils Daulaire, GHC; and Peter Lamptey, Institute for HIV/AIDS, Family Health International. One advocate noted: “It was a very, very good meeting, where they talked about: What could be? What needs to happen in order to address HIV/AIDS? It was a long meeting, it was a very substantive meeting. Following that meeting there was a series of emails that went back and forth

Most advocates mistrust White House protestations that the presidential AIDS Initiative was above politics – in fact, they see politics (and specifically, a desire to appease the religious right) as the catalyst that served to bring together many disparate interests within the administration.

with people at the White House. We [still] had no idea – none of the people who were at that meeting were ever told – what was going to come of those meetings. We heard a couple of days before the State of the Union [in 2003, when the President announced his Emergency Plan for AIDS Relief] that there might be something in there, but we had no idea what it was. We had no idea the magnitude of it.” An administration official confirmed: “The most powerful people in the White House sat in the back of the room and listened: the docs talked about how they’re getting treatment to people, and they’re using it, and they’re getting better, all over the Third World.” The administration credits these advocates’ access with their willingness to provide technical advice and to refrain from rhetoric – and claims that this access transcended politics: “Paul Farmer [was able to] contribute because of his work – he was welcome in the White House, and nobody could be more ideologically different.” This refrain was heard loud and clear by some in the advocacy community. Regarding the Saving Families and Communities platform, one advocate remarked: “We never actually signed on to it, because we were working with the White House and we felt like if we signed on publicly, it would send a mixed message and close the door that we had opened at the White House through back channels.” Their concern was probably well founded. One administration official summarized: “The administration really wanted to listen, but activists made a mistake by being negative – because it felt so good to be negative, because they hate this president – they failed to identify when they did have common ground, and therefore lost their opportunity to participate. The traditional groups could have gotten involved had they been willing to become engaged on the substantive issue of global AIDS – but by insisting on making it political, they lost that opportunity.”

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Most advocates mistrust White House protestations that the presidential AIDS Initiative was above politics – in fact, they see politics (and specifically, a desire to appease the religious right) as the catalyst that served to bring together many disparate interests within the administration: “Samaritan’s Purse was really involved with Karl Rove [senior advisor to the president and widely regarded as Bush’ political point person] and the White House. One of the reasons that the president focuses so much on treatment is that those [evangelical Christian] groups do that work. They do ‘HIV care’ now, and they want to do more – and they say they can do treatment, essentially. Karl Rove said to OMB, ‘we should look into this.’ He heard from the evangelicals, and decided this could be a win-win from both sides, from the liberal groups, from the evangelicals. He said to OMB, ‘see what you can do,’ and “Evangelical Christians (were) very important in getting the issue on the radar screen with the president – that Jesus would want us to do this – they were very influential in the president’s thinking.”

then OMB shepherded it through the process, with the NSC [National Security Council] having some input – because Condi [Condoleeza Rice] was very committed to it, and Jendayi Fraser was advocating for something to happen for Africa. If you look at it now, the NSC has sort of been pushed aside (they’re very busy anyway). Jay Lefkowitz continues to be very involved. Joe O’Neill was put into the middle of it. But I think OMB was the instigator. I don’t even think the

agency folks (like Bill Steiger) were as influential as they wish they could have been. USAID clearly hasn’t been central to the planning. Jack Chow was very involved when he was at State – although he was shuttled aside to some extent because of his moderate views. Dr. Fauci was really involved, and Mark Dybold was really involved. That’s where the GHESKIO contacts come in. Bill Pape is very friendly with Fauci, and lot of what Pape is doing down in Haiti has been funded by NIH for years and years and years. And it’s the model that the NIH is sort of pushing.” Administration officials do confirm that the president, who is known to have a close relationship to Franklin Graham, director of Samaritan’s Purse, was influenced by Christian organizations: “Evangelical Christians (were) very important in getting the issue on the radar screen with the president – that Jesus would want us to do this – they were very influential in the president’s thinking.” But they insist that the calculation was not political: “In this White House, AIDS is not a political issue – the president knows that no one will vote for or against him because of what he does on AIDS.” But while it may be true that the president’s support for AIDS was not likely to win any new votes, there’s no question that many global AIDS groups, from traditional development organizations on the left to conservative faith-based organizations on the right (many with substantial service portfolios in Africa and the Caribbean), stood to benefit mightily from the president’s initiative. And certainly it was in the administration’s interest to keep happy those organizations with whom it was most closely politically aligned. On December 22, 2002, 32 members of the Congressional Black Caucus urged Bush to “launch a major new U.S. initiative to fight AIDS” and “respond on an appropriate scale to address the greatest plague in recorded history.” The signers requested $2.5 billion for international AIDS programs,

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of which 50% should be allocated to the Global Fund – figures that mirrored the Saving Families and Communities Campaign – and also asked Bush to prioritize treatment, expand programs for AIDS orphans and cancel debt for “impoverished countries” to “free up” HIV/AIDS funding. The following day, Bush postponed his trip to Africa, citing rapidly unfolding events in Iraq and the Middle East. Meanwhile, in the months while the president’s Emergency Plan for AIDS Relief picked up momentum, the House/Senate conference on HR2069 languished. After informal conference meetings in September, one congressional aide remarked, “We knew right away that we were going to have trouble.” It wasn’t until October that work began in earnest, with only about a month before the Congress went out of session. Most advocates attribute the failure to conference the bill to a variety of factors: • There was fierce competition between House and Senate staff over which bill would prevail. (“There were nasty pissing matches between the Kerry and the Hyde staff, they couldn’t even be in the same room.”) (“Meetings where [HIRC majority staff] and [SFRC majority staff] were yelling at each other.”) • There were significant jurisdictional problems because the SFRC bill contained provisions that exceeded HIRC’s jurisdiction. “From the House side – the bill was impossible to conference [because of jurisdictional problems]. We did not want to go through a referral to Banking [the House Committee on Financial Services, to address the debt provision in the Senate bill] or [the House Commit-

On December 22, 2002, 32 members of the Congressional Black Caucus urged Bush to “launch a major new U.S. initiative to fight AIDS” and “respond on an appropriate scale to address the greatest plague in recorded history.” The signers requested $2.5 billion for international AIDS programs, of which 50% should be allocated to the Global Fund – figures that mirrored the Saving Families and Communities Campaign.

tee on] Energy and Commerce [because of the new HHS authorities in the Senate bill].” • There were mixed messages from the White House. “The White House was involved in all of this, but [they] didn’t fully know where they wanted to be… They didn’t have a clear-cut position. That made it harder. [Moreover,] State and USAID had differences of opinions about different things; State and HHS had differences of opinions; USAID and CDC had differences of opinion… and the White House had not been pulling everyone together. It may have been active stalling or it may have been passive stalling – but one way or another, there was not leadership from the White House in trying to get this bill done.” • There was hesitation on the part of the Republicans. “Through conference, you had a Democratic Senate – and then the elections [in late 2002] reversed that. There may have been some reluctance all along on the part of Republicans in the Senate to really negotiate with the hope that they may be able to [regain the Senate] in the 2002 elections. Why turn this bill right now so that it becomes a Kerry bill?” • The community was disorganized. One community advocate who worked hard on the bill conference said: “The groundwork hadn’t been done. We in the community were at fault – we could

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have anticipated the [jurisdictional] problems.” Congressional aides concurred, in part: “The NGOs were kind of asleep at the switch – maybe it was resentment that they hadn’t been involved in the drafting [of the Senate bill]. They realized at the end of the game that “Oh, my God, this authorization bill could go down the tubes.” “When we really needed them, they didn’t come through with the organizational strength – the AIDS community is not particularly sophisticated or organized – they have a naïve view of what’s within the realm of possibility.” Congressional aides who participated in the conference – from both the House and the Senate – praise GHC and PAF for their efforts (“the Glaser people are fairly grounded… they had entrées into the House Republicans… they were important, they tried very hard”), and acknowledge that GAA and DATA worked the issue very hard, as well. Whatever the reasons, the last minute efforts failed to yield a bill acceptable to both the House and Senate, and for the moment, at least, the bill died. One congressional aide summarized: “There was a presumption on the Senate side that the House should just accept the Senate bill and pass it – and there was a presumption on the House side that our bill was smaller, cleaner, and more feasible. So neither side began talking in earnest, negotiating in earnest, until the very tail end of the session. And at that point, they did come very close to getting a bill. They did finally, toward the end, have a conference agreement that they could move with. But at that point in the process, it was so late in the game that they just ran out of time in terms of bringing aboard all of the other players. Once you have your general consensus, then you have to buy off all of your individual people on the House or Senate side. They didn’t have time to work through all of those issues. They could have – had they really started negotiating in earnest back in August, instead of November. We could have come to an agreement with Judd Gregg [who, although certainly not the only obstacle, was credited with ‘driving the final nail in the coffin of the conference’].” As in the previous session, in addition to H2069, advocates were also faced with many competing priorities during 2002. Multiple appropriations bills, as well as a $28.9 billion supplemental appropriations bill (mostly for homeland security) all contained funding allocations for the Global Fund. Following the Barcelona International AIDS Conference, 12 Republican Representatives requested that HHS Secretary Thompson account for all US spending that went to support the conference. Subsequently, Roland Foster, staff of the House Government Reform Committee, asked HHS to report how much federal funding was awarded to 12 (later 16) US nonprofit organizations that had protested at Secretary Thompson’s speech. Then, in November 2002, the Republicans regained the Senate. Shortly thereafter, after making a remark that many regarded as racist at Strom Thurmond’s 100th birthday party, Senate Majority Leader Trent Lott (R-Miss.) was replaced by Sen. Bill Frist, an occasion that prompted effusive press releases from AHF and GHC: “Sen. Frist’s leadership has mobilized his party and the Senate in addressing the global AIDS crisis. ...As majority leader, he can quickly move legislation he has authored that finally brings life-saving treatment to the world’s poor,” said AHF, while GHC Director Nils Daulaire remarked: “As a physician, humanitarian and soon-to-be Republican leader of the Senate, Senator Bill Frist can play a critical role in helping Congress to understand and take action on the wide and complex range of global health issues, par-

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ticularly the global AIDS pandemic. ...He understands the role the US government needs to adopt if we are to stop the ravages of AIDS. As a leader of the Senate, his voice will be heard around the globe.” At no point during the year was the passage of HR2069 assured. At the end of 2001, it was still not clear that this was the bill. THE 108TH CONGRESS

Most advocates admit to being “completely shocked” by the president’s announcement during his State of the Union address on January 28, 2003, of a $15 billion Emergency Plan for AIDS Relief. After hearing rumors to that effect, however, many of the participants at the November White House meeting may have chosen to hedge their bets in a letter delivered one day in advance of the address – signed by 100 AIDS health professionals, including Nils Daulaire, Paul Farmer, Eric Goosby, and Peter Lamptey, as well as former Surgeons General Antonio Novello and Julius Richmond; Mathilde Krim, Founding Chairwoman of AMFAR; James Curran, Dean of the Rollins School of Public

Advocates who had developed relationships and expertise in the 106th and 107th Congresses clearly had an advantage, particularly in the House, where the leadership remained the same.

Health at Emory University; Richard Marlink, Director of the Harvard AIDS Institute, and Paul Volberding, head of the International AIDS Society – urging Bush to commit more resources for fighting HIV/AIDS. After the State of the Union address, however, any sense among advocates that a global AIDS bill wasn’t real rapidly dissipated. That the president had requested $15 billion dollars raised the stakes immeasurably, and as is typical in Washington, suddenly everyone was interested. Advocates who had developed relationships and expertise in the 106th and 107th Congresses clearly had an advantage, particularly in the House, where the leadership remained the same. (In the Senate, Republicans had regained control, diminishing the influence of Senators Kerry and Kennedy, while Sen. Helms had retired, elevating Sen. Richard Lugar (R-Ind.) to SFRC Chairman. Moreover, when Sen. Frist became Senate Majority Leader, he relinquished his committee assignments. From the beginning, Sen. Frist made known his desire to have a close working relationship with the White House, and therefore was expected by many advocates to “toe the line” for the president. Perhaps not unsurprisingly, on February 14, 2003, Sen. Frist withdrew his support for HR2069, reportedly in favor of a draft White House bill that advocates characterized as “greatly weakened.” Meanwhile, Sen. Lugar, now SFRC Chair, was apparently dissatisfied with Frist’s move, and announced his intention to submit a bipartisan global AIDS bill, using HR2069 as a template. Sen. Biden, now ranking minority member of the committee, reportedly deferred to Kerry. Four days later the Republican Senate leadership announced their legislative agenda for the 108th Congress, which included a global AIDS bill among its top ten priorities. Disputes over the shape a global AIDS bill would take revolved around two issues: 1) the amount allocated to the Global Fund, particularly in the first year (the White House favored a $200 million contribution in the first year, as opposed to the $2.2 billion over two years provided in the Kerry/Frist

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bill), and 2) whether the bill would codify the ‘Mexico City’ policy, which barred US funding for international groups that support abortion, even with their own money, through direct services, counseling or lobbying activities. (In a February 11, 2003 memo to the State Department, a senior Bush administration official said that groups that deal with abortion services would not be prohibited from receiving funds from the administration’s new AIDS initiative, but would have to administer AIDS programs separately from family planning programs.) Both Sen. Frist and Rep. Hyde tried to dissuade colleagues from inserting language into the bill that would codify the policy, fearing that to do so would derail it entirely. “I want the AIDS bill to pass and I think misdirected attention to other issues might overly burden the AIDS bill,” Hyde said. Advocacy for At the end of the bill, a ‘sense of Congress’ specified that “an effective distribution of [funds appropriated under the bill] would be: 55% of such amounts for treatment of individuals with HIV/AIDS; 15% of such amounts for palliative care of individuals with HIV/AIDS; and 20% of such amounts for educational efforts for HIV/AIDS. According to Hyde’s staff, the specific percentages for treatment – very controversial among the advocacy community – were inserted at the behest of AHF.

a global AIDS bill picked up on all fronts. On March 10, 2003, activists demonstrated at Sen. Frist’s Washington, D.C. home (with sirens and flashing lights at 6:00 in the morning), while another group demonstrated at his Nashville office later that same day. On March 17, 2003, Rep. Hyde introduced HR1298, the United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003. In substance, HR1298 largely represented the House/Senate compromise that had been reached at the tail end of the 107th Congress. As part of an overall $15 billion, five-year authorization, it provided for a $1 billion contribution to the Global AIDS Fund in FY04, though it specified that the US contribution could total no more than 33% of all contributions received by the fund. Authorizations for HHS agencies and debt relief provisions – which stalled the bill conference in 2002 – had been removed. Very notably, at the end of the bill, a ‘sense of Congress’

specified that “an effective distribution of [funds appropriated under the bill] would be: 55% of such amounts for treatment of individuals with HIV/AIDS; 15% of such amounts for palliative care of individuals with HIV/AIDS; and 20% of such amounts for educational efforts for HIV/AIDS. According to Hyde’s staff, the specific percentages for treatment – very controversial among the advocacy community – were inserted at the behest of AHF. Explained one advocate: “We tried to get them out, but you couldn’t publicly advocate against a treatment earmark. Hyde’s staff was aware that the advocacy community was opposed to earmarks, but they thought it was a good idea – they wanted to show that they were in favor of treatment. The White House was also okay with them – and it was a hard thing to come out against.” AHF was also successful at securing a requirement for an annual report on “the number of new patients currently receiving treatment for AIDS in each country that receives assistance under this act.” On March 20, SFRC delayed consideration of a Lugar global AIDS bill, while HIRC delayed its scheduled mark-up of HR1298, reportedly over concerns among Republican leadership in both

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chambers that the bills did not sufficiently favor abstinence over condom distribution. At this point, conservative groups – including Concerned Women of America and the Family Research Council – had become interested in the global AIDS issue, urging members, in addition to emphasizing abstinence, to include “opt-out” provisions in the bill for faith-based groups that did not want to participate in condom distribution. (The Family Research Council described the AIDS bill as a potential “air-lift for condoms.”) On March 26, 2003, the Corporate Council on Africa, comprised of companies that “represent nearly 85% of US private sector investment in Africa,” announced a new affiliate, the Coalition for AIDS Relief in Africa (CARA), to lobby Congress to pass President Bush’s AIDS initiative. Funded mostly by drug companies and other multinationals, most of whom contributed $25,000, CARA is co-chaired by conservative exCongressman J.C. Watts. Another group, the Corporate Task Force on AIDS, run by former Bush campaign aide Terry Holt, secured contributions of $15,000 each from Abbott, Pfizer, and other companies. According to the Washington Post, the White House encouraged companies to support the president’s initiative through the two coalitions and kept close tabs on which businesses contributed. On April 3, 2003, when the HIRC finally did mark-up HR1298, it proved to be a fast-moving train for a variety of special interests – of particular note:

Conservative groups – including Concerned Women of America and the Family Research Council – had become interested in the global AIDS issue, urging members, in addition to emphasizing abstinence, to include “opt-out” provisions in the bill for faith-based groups that did not want to participate in condom distribution. The Family Research Council described the AIDS bill as a potential “air-lift for condoms.”

• An en bloc amendment offered by Rep. Hyde: 1) again at the behest of AHF, further strengthened treatment earmarks, specifying that 75% of all treatment funds be spend on pharmaceuticals and 25% on care, and establishing specific goals for treatment programs (500,000 individuals in FY04, 1,000,000 individuals in FY05, and 2,000,000 individuals by FY06); 2) provided significantly enhanced authority for the HIV/AIDS response coordinator in the State Department (to directly approve programs, to transfer money between accounts, and to resolve disputes among agencies), apparently at the behest of conservative religious groups who feared that USAID would be less sympathetic to their programs; 3) added various measures to ensure that pharmaceuticals purchased through the initiative are not diverted to the black market, and discreetly removed the reference to the president having said in his State of the Union address, “And the cost of those drugs has dropped from $12,000 a year to under $300 a year – which places a tremendous possibility within our grasp,” probably at the behest of the pharmaceutical industry; 4) sprinkled liberally throughout the bill the words “including faith-based organizations” when describing groups eligible for funding. • An amendment offered by Rep. Joseph Pitts (R-Penn.) favored programs that stress abstinence over programs that provide condoms; Rep. Lee offered a substitute amendment that prioritized

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programs that utilize the ‘ABC’ (abstinence, be faithful, use condoms) model. • Rep. Dana Rohrbacher (R-Calif.) offered an amendment that required 10% of funding to be used to help orphans and vulnerable children. As with treatment, however, much of the advocacy community is opposed to specific earmarks: “It’s another earmark that’s hard to come out against. If you talk to people, they say you don’t want to do ‘just orphan’ programs, because you stigmatize kids, so it’s better to increase funding for children overall. You also set up a dichotomy between children who have lost their parents and those who haven’t, so when those who have come into a family, there’s money for them to go to school, but not [for] the others…” • Rep. Smith (N.J.) offered an amendment that prohibited funding to any organization that does not explicitly oppose prostitution and sex trafficking. • The Committee defeated an amendment offered by Rep. Pitts that required the Global HIV/AIDS coordinator to “respect the views of faith-based organizations by not requiring such organizations to participate in any aspect of any assistance program if it violated their views as a matter of conscience.” By all accounts, it was Rep. Hyde himself who steered the committee away from the ‘Mexico City’ debate, and away from the abortion issue. As one advocate noted: “The family planning groups were considering trying to pull down the whole AIDS bill… then Hyde said ‘no amendments on abortion’ – thank God, [HIRC majority staffer] Peter [Smith] managed that. At the markup – Hyde managed it extremely well – it was clear that Lee and others had counter-amendments, and that it [abortion] could kill the bill.” Two weeks later, on April 16, 2003, with the White House and Senate positions on an AIDS bill still unclear, HHS Secretary Thompson was again interrupted during a luncheon talk by ACT UP protestors who demanded that Bush pledge $15 billion for the Global AIDS Fund. On April 18, 2003, Rep. Pitts announced on Concerned Women Today (Concerned Women of America’s daily radio program) that the House Energy and Commerce Committee would draft a competing global AIDS bill that would include more “pro-family provisions.” On April 29, 2003, in a Rose Garden ceremony, President Bush announced his support for HR1298 and urged the Congress to pass a bill before Memorial Day. Specifically citing the work of GHESKIO in Haiti, Bush noted: “Many past international efforts to fight AIDS focused on prevention at the expense of treatment. But people with this disease cannot be written off as expendable. Integrating care and treatment with prevention is the cornerstone of my emergency plan for AIDS relief, and we know it works.” He also noted: “And because so much of the health care in sub-Sahara Africa is provided by facilities associated with churches and religious orders, we must ensure that the legislation provides the greatest opportunity for faith-based and community organizations to fully participate in helping a neighbor in need.” Two days later, on May 1, 2003, when Rep. Hyde brought HR1298 to the House floor, he said “we are all indebted to a lot of people from the outside, the president of the United States; the singer Bono; and then our colleagues, the gentleman from California (Mr. Lantos), [Rep. Tom Lantos, DCalif.] the gentlewoman from California (Ms. Lee), and from a distinct perspective, the gentleman

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from Pennsylvania (Mr. Pitts) for raising concerns of America’s faith-based community.” HR1298 passed the House with several amendments, including: • A Pitts amendment required that 33% of the bill’s HIV/AIDS prevention funding be allocated for abstinence and monogamy programs. • A Smith (N.J.) amendment strengthened “conscience” language in the bill to ensure that religious groups receive funding even if they object to certain aspects of prevention programs, including condom distribution. • A Stearns (Rep. Cliff Stearns, R-Fla.) amendment required that the US reduce its contribution to the Global Fund by an amount equivalent to every dollar paid to any Global Fund staff member that exceeds the salary of the US vice president. • A Crowley (Rep. Joseph Crowley, D-N.Y.) amendment called for educating men and boys about gender equality. • A McCollum (Betty McCollum. DFL-Minn.) amendment allocated a minimum of 10% of funding for FY06 through FY08 to programs aimed at orphans and “vulnerable children” affected by HIV/AIDS, and required that 50% of those funds go to NGOs and faith-based groups. • A Ballance (Frank W. Ballance, Jr., D-N.C.) amendment “express[ed] the sense of Congress that African nations that object to U.S. food aid on non-scientific grounds [referring to concerns about genetically modified food] should accept this food assistance to improve nutrition.”

The President remarked: “Integrating care and treatment with prevention is the cornerstone of my emergency plan for AIDS relief, and we know it works.” He also noted: “And because so much of the health care in sub-Sahara Africa is provided by facilities associated with churches and religious orders, we must ensure that the legislation provides the greatest opportunity for faith-based and community organizations to fully participate in helping a neighbor in need.”

• An amendment offered by Rep. Billy Tauzin (R-La.), chairman of the House Energy and Commerce Committee, called for the “distribution of resources” to specific countries to be based on size, demographics and other factors to “ensure the countries that need assistance the most receive it first.” The amendment also commissioned the Institute of Medicine to conduct a report to compare the success of different HIV/AIDS prevention programs and methods proposed in the bill. Many in the advocacy community were appalled by the conservative amendments attached to HR1298 in the House, particularly the Pitts amendment related to abstinence education and felt double-crossed by the White House: “There were assurances from the White House that they were not going to push on the abstinence-only piece, that that wasn’t really their issue, that they were pushing Joe Pitts not to introduce it. But then when he did introduce it, they lobbied [for] it really, really, hard. So many of us who had worked really closely with the White House – and who had been saying that the White House was really on the right side of this – felt pretty betrayed by them. Because we had said, ‘they [the White House] said they’re not going to push hard on this.’ We actually felt like we could win the abstinence-only amendment, but then when they [the White House] weighed in, it was gone.” Once HR1298 passed the House, attention shifted immediately to the Senate, where it was still

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unclear whether there would be a competing bill. Mainstream advocates, including IIWG members, said: “After it passed the House, we worked with the Senate to potentially get them to do amendments. We went round and around with Senate Democrats about the prostitution thing, about the abstinence thing. And we were asked by Senate Democrats, ‘Is there any way we can not vote on this abstinence thing?’” As examples of the fluidity of the fate of the Global AIDS Initiative in the Senate, on May 7, 2003, Sen. Lugar introduced his own bill, the United States Emergency Plan for AIDS Relief Act of 2003 (S1009) with five co-sponsors (including Senators Kerry and Biden). The next day, on May 8, 2003, Sen. Durbin announced the launch of a bipartisan, bi-cameral Many in the advocacy community were appalled by the conservative amendments attached to HR1298 in the House, particularly the Pitts amendment related to abstinence education, and felt double-crossed by the White House.

Global AIDS Emergency Task Force, of which 32 lawmakers were currently members, to offer an “effective forum” for lawmakers to respond to the HIV/AIDS pandemic and “help shape and strengthen” global HIV/AIDS initiatives. That same day, 13 conservative groups sent a letter to Sen. Frist calling for the Senate to take up HR1298 “without amendment” to avoid a “vigorous fight from both the right and the left regarding final language” that would “upset the balance that was achieved on the issue in the House.” The

letter continued, “While the bill as passed by the House is far from perfect in our view, in the spirit of political compromise and in light of the urgency of the AIDS crisis in Africa, we are willing to support the bill being sent to the president since the House succeeded in adding a few key amendments we considered critical,” including directing funds for abstinence programs and creating Global Fund oversight. Signers included the Family Research Council; the Religious Freedom Coalition; the Population Research Institute; Kids First Coalition; the Wilberforce Forum; Tradition, Family, Property, Inc.; Focus on the Family; the Christian Coalition of America; the Beverly LaHaye Institute; the American Family Association; Prison Fellowship Ministries; Concerned Women for America; and the Traditional Values Coalition. On May 13, 2003, Sen. Frist announced his intention to bring to HR1298 to the Senate floor, bypassing SFRC chairman Lugar. To secure support for a “no amendments” strategy, Sen. Frist’s staff convened a meeting of NGOs that included GHC, PAF, Todd Shelton of the Sheridan Group (representing SFAF), DATA, AHF, Log Cabin Republicans, J.C. Watts (representing CARA), and the US Conference on Bishops. One advocate recalled: “Both AHF and J.C. Watt’s group came out and scolded the activist community – said how important it was to support the no-amendment strategy. But we couldn’t – there were things that needed to be changed, including things about the Global Fund (the matching stuff), the condom stuff…AAC came out in favor of the no-amendments strategy – they’re positioning themselves with AHF and the Log Cabin Republicans. This was also the time that NORA was coming apart, so that’s a whole other piece.” To the chagrin of many global AIDS advocates, AAC came out in favor of passing HR1298 in the Senate without amendments. While advocates reportedly had Senators (including Sen. Lugar) prepared to offer amendments,

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the no-amendment strategy ultimately prevailed among Senate Republicans, in part because of fear that the bill could get worse: “Everyone stayed on the no amendment rule, because everyone was afraid that [Sen.] Sam Brownback (R-Kan.) would come out of the woodwork with a gag rule [Mexico City] amendment.” The Senate passed HR1298 on May 16, 2003 by voice vote, after passing a single amendment (offered by Sen. Biden) to increase funding for debt relief in countries hit hardest by HIV/AIDS. All other amendments failed, including: • Sen. Feinstein offered an amendment to strike the requirement that 33% of prevention funds be spent on abstinence programs • Sen. Kennedy offered an amendment to require that ARVs purchased through this initiative be purchased at the lowest possible price. • Sen. Durbin offered an amendment to increase the authorization for the Global Fund to $1.2 billion in FY05, and to limit US contributions above 50% of the amount authorized to 25% of the total contributions received by the fund. On May 21, 2003, the House passed HR1298, as agreed to by the Senate. On May 27, 2003, in a ceremony at the State Department attended by the ambassadors from the 14 countries affected by the bill, as well as many advocacy groups (including SFAF, GHC, PAF, AAC, Catholic Relief Services, Samaritan’s Purse, the International Association

Global AIDS programs have historically been considered in the context of foreign aid and international development, which may account for the inertia with which the United States approached the issue until very recently. Many conservatives viewed aid programs with scorn. One administration official characterized traditional development programs as “the transfer of money from poor people in rich countries to rich people in poor countries.”

of Physicians in AIDS Care, and others), the president signed the bill into law.

PHASE II DISCUSSION As noted in the introduction, global AIDS programs have historically been considered in the context of foreign aid and international development, which may account for the inertia with which the United States approached the issue until very recently. Because the problems of the developing world are viewed as intractable – poverty, hunger, unstable governments, corruption, lack of clean water, etc. – AIDS became just another among a long list of problems. International development programs were famous for their incremental approach, and USAID in particular was noted for a bureaucracy so bloated that much foreign-aid money never left the US. Many conservatives viewed aid programs with scorn. One administration official characterized traditional development programs as “the transfer of money from poor people in rich countries to rich people in poor countries.” Until the late 1990s, this is the context in which global AIDS programs were discussed. The success of the Global AIDS Initiative was, and is, dependent on breaking the development

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paradigm – that is, thinking about international AIDS programs outside the context of international development, a possibility that only emerged upon the advent of successful ARV treatments. Suddenly, at least as it appeared to many activists, while “providing someone with clean water may still require time, in the meantime you could prevent them from dying from AIDS.” Though not as quickly as the activists (ACT UP and Health GAP were really the first to articulate the need for international ARV treatment programs as a policy issue), other participants in the global AIDS debate, at both ends of the political spectrum, were eventually persuaded by, or at least accepted this logic.16 Indeed, as one administration official remarked, “AIDS needs to work in a medical healthcare model, targeting a limited number of countries, [with] a limited The success of the Global AIDS Initiative was dependent on thinking about international AIDS programs outside the context of international development. Suddenly, it appeared to many activists, while “providing someone with clean water may still require time, in the meantime you could prevent them from dying from AIDS.”

number of services.” While breaking paradigms is hard to do, the advantage is that once it’s done, the slate is wiped relatively clean. Activists, in particular, view the Global Fund as just such a clean slate, and as such, a cure-all for the many problems posed by AIDS. A clean slate made possible a broad strokes advocacy campaign, as embodied by the Global AIDS Alliance’s three-part campaign: Donate the Dollars! Treat the People! Drop the Debt! (Domestically, the Ryan White CARE Act – which broke the heretofore unfixable healthcare paradigm – provided a similar clean slate in 1990.) Because the Global AIDS Initiative does represent such

a shift in paradigm, it is also not a perfect lens through which to view domestic AIDS advocacy generally, at least insofar as conceptual analysis and policy development are concerned. As previously discussed, many of the problems facing domestic AIDS advocates are those associated with mature programs, and yes, incremental change. It will be interesting to examine the Global Fund 15 years hence, and in particular, to examine how activists then view the Global Fund, which should it survive, will by then have evolved into a mature, probably inflexible, hopefully not intractable, bureaucracy. The Global AIDS Initiative does, however, provide useful lessons with respect to advocacy strategy and tactics, lessons that may probably be applied across many issues, including the following: • Policy advocacy is a process that requires a long-term strategy. While it may seem obvious, those groups that had longstanding relationships and experience with global AIDS issues were strategically in a better position to offer advice, lobby members of Congress or the administration, 16 Other paradigm shifts, though neither raised by advocates during interviews nor much exploited within their advocacy strategies, also contributed to increasingly broad governmental support (particularly among agencies outside of the Department of Health and Human Services) for global AIDS programs. Most importantly, in the late 1990s, AIDS began to be characterized as a national security threat, a position formally endorsed by the Clinton administration in May 2000 and buttressed by a National Intelligence Council report, “The Global Infectious Disease Threat and Its Implication for the United States,” In June 2000, the United Nations Security Council voted unanimously to adopt its first resolution on a health issue, calling for intensified AIDS education and prevention efforts among UN peacekeepers and urging countries to develop long term plans for fighting the epidemic. Though somewhat controversial among Republicans, the “AIDS as a national security threat” position was quickly adopted by the incoming Bush administration. In his first interview upon assuming office, Secretary of State Colin Powell called AIDS a “national security problem and an economic problem, particularly in Africa.”

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mobilize constituents, talk to the media – in short, to advocate – at every point along the evolution of the Global AIDS Initiative. As early as 1999, Rep. Lee’s office had identified a group of advocates with whom to strategize on global AIDS issues (including Health GAP, the Episcopal Church, and Church World Services). IIWG members – in particular, GHC, SFAF, and PAF – had established themselves well before the 107th Congress both as reliable sources of information, but also as consistent representatives of a broad constituency, both with individual members, and with the Senate Foreign Relations and Banking Committees and the House International Relations and Financial Services Committees. It comes as no surprise that these groups assumed advocacy leadership roles once HR2069 came into play. • Every advocacy effort requires insiders and outsiders. At some level, all policy advocacy requires insiders, players who can secure access, sit down, talk, negotiate, broker compromises, and ultimately, cut a deal. With the Global AIDS Initiative, GHC was the quintessential insider. Playing such a role requires substantial resources (both human and fiscal), including: 1) sufficient expertise to intelligently criticize complex policy issues or develop policy options; 2) dependability and consistent follow-through, often on a very fast turnaround; 3) highly developed relationships, both in Congress and in the administration; 4) established mechanisms

All policy advocacy requires insiders, players who can secure access, sit down, talk, negotiate, broker compromises, and ultimately, cut a deal. GHC was the quintessential insider. But policy outsiders are also necessary. Health GAP’s claim to have “changed the realm of the possible” seems at least partly true.

for information sharing and decision-making among stakeholders; and 5) sufficient (but not necessarily absolute) trust among all parties. As IIWG chair (and now chair of the Global AIDS Roundtable), GHC meets these criteria. Others who work in this model include PAF and SFAF, and to a lesser extent AHF. But because policy – especially policy related to controversial issues like AIDS – is too often developed on a “path of least resistance” model, outsiders are also necessary, in order to raise expectations. This is true in both friendly (as was amply demonstrated during the Clinton administration) and hostile environments. While pompous, in the case of the Global AIDS Initiative, Health GAP’s claim to have “changed the realm of the possible” seems at least partly true. It was certainly the activists (including, principally, ACT UP, GAA, and Health GAP) who first articulated, and then carried, the $1 billion+ figures for a US contribution to the Global AIDS Fund that ultimately became reality. To be sure, the administration claims that activist groups “[did] nothing, [had] no role, [made] no contribution” in shaping the president’s Emergency Plan for AIDS Relief and congressional staffers found them irritating (“I occasionally talk to [Health GAP] but I find [them] so obnoxious that I can hardly stand it”), threatening (“at times they get a little out of control”), or even counterproductive (“throwing grenades is counterproductive”). But perhaps the inside players doth protest too much. It seems too much of a coincidence that the numbers in the final bill ultimately reached the levels that the activists had previously established. Rather, without the activists setting the bar very high, it seems likely that someone

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would have caved at a much lower level. • You don’t have to be there, but you have to be there. Among those groups that had significant access, and ultimately, significant influence on the evolution of the Global AIDS Initiative are two groups based in California, SFAF and AHF. While this would suggest that policy influence is not limited to “inside the beltway” organizations, their advocacy also demonstrated what is required for long-distance advocacy to succeed. Both SFAF/Pangaea and AHF visited Washington routinely and frequently throughout the evolution of the Global AIDS Initiative. This allowed them to conduct face-to-face meetings with congressional staff and administration officials, and in SFAF’s case, to participate in coalition strategy making. Both groups also employed paid lobbyists to buttress their efforts, and to ensure that they had both a continual ongoing presence and were represented at last-minute meetings. • You can buy access. While in Washington this goes without saying, it is a reality that is sometimes overlooked in the non-profit community. Both SFAF and AHF significantly increased their influence through the use of paid lobbyists. This was probably true for other non-profit organizations as well, particularly academic research centers (e.g. Columbia University Mailman School of Public Health, University of California San Francisco AIDS Research Institute), and it was obviously true for the pharmaceutical industry. • And finally, all that’s required to play is to play. While groups with long experience in global AIDS issues clearly started with an advantage, as the Global AIDS Initiative evolved, many organizations – some well-suited and some not – jumped in and contributed to the debate. This suggests that some groups are not inherently better situated to advocate on a given issue, but rather, that any groups with sufficient resources and technical skills can probably advocate on almost any issue. In other words, it’s not rocket science. None of the lessons of the Global AIDS Initiative are surprising. On the contrary, most of the successful tactics employed by AIDS organizations were simply a matter of textbook advocacy. Organizations decided that the issue was important and then pursued it. In comparison to domestic issues, some parallels are obvious. Appropriations advocacy is a good example: organizations have decided that the issue is important and have developed the resources and skills to pursue it. Tactics and strategy remain simply questions of technique. Because it is so young, the evolution of the Global AIDS Initiative to date doesn’t provide much in the way of guidance to answer the harder questions currently facing domestic advocates: Once programs are mature and have invested constituencies, how can they be further evolved to adapt to a changing environment? How can policy development that rises above the needs of individual constituencies be encouraged and supported? How can the parochial interests of stakeholders be overcome to work toward a greater end? How can emergency solutions be refined into more thoughtful, integrated solutions? What mechanisms might encourage collaboration and compromise? Hopefully, as the AIDS community finds answers to these questions, in another 15 years – when the same questions will likely arise in the context of global AIDS programs – we will be able to draw on experiences domestically to answer them.

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CONCLUSION An examination of the broad HIV policy advocacy landscape during 2001-2002, combined with the case study of the evolution of the Global AIDS Initiative during that same period, suggest that the “crisis” in HIV policy advocacy identified by so many advocates is related as much to wherewithal as capacity. In other words, the HIV policy advocacy network demonstrates substantial capacity, at least functionally (i.e. legislative and administrative lobbying, policy analysis, grassroots organizing, etc.). Moreover, this functional capacity is evident both on issues of obvious proprietary interest to domestic HIV policy advocacy organizations (i.e. HIV appropriations) as well as on broader issues (i.e. the Global AIDS Initiative) that may be of less direct benefit to individual organizations. What is lacking is the commitment on the part of stakeholders system wide (HIV policy advocacy organizations and their constituent supporters) to dedicate the necessary resources to: 1) develop broad, cross-issue policy recommendations, critiques, and analyses, and 2) support and maintain a mechanism to permit (or persuade, or even compel) disparate, sometimes competing interests within the HIV community to collaborate and compromise. The impact of these deficiencies is most pronounced with respect to the evolution of mature programs, such as the Ryan White CARE Act or CDC-funded HIV prevention programs, as well as programs for which there is no clear vested interest on the part of stakeholders, such as entitlement programs or categorical programs targeting various disadvantaged populations, including substance users, criminal justice populations, or the mentally ill – the widely acknowledged “critical gaps” in HIV policy advocacy. Part of the problem is related to funding. As previously noted, some important early HIV policy development was sup-

The “crisis” in HIV policy advocacy identified by so many advocates is related as much to wherewithal as capacity.

ported through grants from foundations – including the Kaiser Family Foundation, the Gund Foundation, and the MetLife Foundation. These early policy development grants provided the impetus for the HIV policy advocacy community to craft, through collaboration and compromise, forward-thinking policy proposals (e.g. the HIV prevention community planning model), as well as strategies to integrate the perspectives of the HIV community within larger programs (e.g. the Americans With Disabilities Act). Typically, these grants supported a process whereby a grantee would convene a representative group of stakeholders to deliberate a particular issue, craft a consensus statement or position, develop policy recommendations, and delineate an implementation plan. Such a process was used early in the epidemic to develop a new paradigm for HIV prevention community planning, for example, and a blueprint for its implementation. More recently, as discussed above, the Center for Strategic and International Studies undertook such a project via their Task Force on HIV/AIDS, the results of which formed the basis of early drafts of the Senate’s Global AIDS Bill. As noted by many informants, the funding for such projects has largely evaporated. Such issue-specific grantmaking continues to present an opportunity for funders to influence federal HIV policy advocacy. Many areas of HIV policy would benefit from a rigorous period of analysis

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and policy development, ideally supported by a multidisciplinary process in which stakeholders deliberate and develop recommendations with a broad consensus. Potential areas of inquiry include the design and operation of HIV prevention programs (including HIV prevention community planning), population-specific services and programs for vulnerable populations (such as drug users, prisoners, veterans, or the mentally ill), the future evolution of Medicaid/Medicare programs for HIVinfected persons, school-based sexuality education, etc. (It’s too late to address the reauthorization of the Ryan White CARE Act.) In most cases, simply the availability of resources could provide the necessary spark to ignite debate concerning critical issues that are otherwise languishing. But funding is not the only impediment. Obviously, most Sadly, the real missing ingredient in the HIV policy advocacy mix is leadership, specifically the charismatic leadership necessary to corral stakeholders, inspire them to subscribe to a vision larger than their individual programs, negotiate compromises, and ultimately build (and enforce) consensus on difficult issues facing the community.

Washington-based organizations develop priorities based at least in part upon the wishes of their constituent contributors. The system’s current capacity and priorities – which favor appropriations above all else – are clearly a reflection of that. If organizations that contribute to Washington-based HIV policy advocacy organizations – principally large, regional AIDS service providers like AHF, APLA, GMHC, and SFAF and others – favored a more broad-based approach, they would be particularly well-positioned to make it happen. But with neither constituent organizations nor foundations to support this type of work, Washington-based HIV policy advocacy organizations are understandably reticent to commit resources or time and

are unlikely to develop or maintain the substantial expertise necessary to pursue such relatively complicated issues. While the existence of FAPP clearly demonstrates interest and commitment on the part of both regional and national stakeholders, it’s not at all clear that participants are committed to developing and supporting a new organization – ideally, a new collaborative mechanism to replace AAC. Rather, it seems more likely that FAPP participants are simply hedging their bets, ensuring through their presence that they are in a position to offer input in case something develops, or to defend their programs in the event that they are threatened. That FAPP has yet to demonstrate the capacity for real policy development, compromise, or consensus building is hardly a surprise, given its current “marriage of convenience” structure. Nor is it likely to do so in the future, absent the leadership necessary to cohere a broad-based community organization, by securing from its participants both a substantial commitment of resources, as well as a commitment to a collaborative decision-making process. (The current opt-in structure is unlikely to survive more than a few instances in which some participants feel sufficiently threatened or undermined by a position that other members endorse that they withdraw from the partnership.) Were an entirely new Washington-based organization dedicated to HIV policy advocacy established, as some have proposed, it, too, would confront the same challenges that now face, or that will face FAPP. Sadly, the real missing ingredient in the HIV policy advocacy mix is leadership, specifically the

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charismatic leadership necessary to corral stakeholders, inspire them to subscribe to a vision larger than their individual programs, negotiate compromises, and ultimately build (and enforce) consensus on difficult issues facing the community. While as previously mentioned, many organizations (including AMFAR, NAPWA, NMAC, and others) are institutionally well positioned to step into the leadership void, none seem inclined to do so, nor do they currently possess the requisite skills. (AAC has recently taken steps to reconstitute itself, advertising for multiple senior staff positions, but it remains to be seen whether the agency will be able to regain credibility.) Absent the emergence of new leadership (maybe, but not necessarily through a new organization), even additional resources would not be guaranteed to improve the status quo. On an optimistic note, it must be emphasized that the HIV advocacy movement, especially compared to social movements in general, remains young. In the context of its relatively brief, twenty-plus year history, its achievements are impressive indeed and in fact, have already provided the blueprint for younger-still social change movements, particularly those advocating on behalf of those with other health issues. As the movement continues to evolve and mature, HIV advocates themselves may well seek to learn – as they have done in the

On an optimistic note, it must be emphasized that the HIV advocacy movement, especially compared to social movements in general, remains young. In the context of its relatively brief, twenty-plus year history, its achievements are impressive indeed

past – from the histories and experiences of other social movements, particularly the equal rights and civil rights movements. The HIV community, with its impressive record of overcoming adversity, its continuing ability to attract the talents of creative and intelligent players, its track record for formulating innovative public policy responses, and its broad network of powerful institutions supported by strong local and regional constituencies, certainly has within its grasp to power to right the situation. But unless and until that happens, the state of HIV policy advocacy seems likely to remain, for the time being at least, in flux.

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APPENDIX

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FEDERAL HIV POLICY ADVOCACY PROJECT

% FEDERAL HIV POLICY-RELATED

ACT UP PHILADELPHIA

TOTAL MEDIA CITATIONS

ORGANIZATION

NON-FEDERAL HIV POLICY-RELATED

(universe = all media citations)

FEDERAL HIV POLICY-RELATED

MEDIA CITATIONS: FEDERAL POLICY VS. NON-FEDERAL POLICY RELATED

22

0

22

100%

ADAP WORKING GROUP

8

1

9

89%

AIDS ACTION COMMITTEE

4

52

56

7%

18

6

24

75%

AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

8

0

8

100%

AIDS FOUNDATION OF CHICAGO

5

6

11

45%

AIDS HEALTHCARE FOUNDATION

21

37

58

36%

AIDS PROJECT LOS ANGELES

17

15

32

53%

AIDS RESEARCH INSTITUTE

19

5

24

79%

6

0

6

100%

AMERICAN FOUNDATION FOR AIDS RESEARCH

13

13

26

50%

BLACK AIDS INSTITUTE

AIDS TREATMENT AND DATA NETWORK

10

2

12

83%

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

2

1

3

67%

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

0

0

0%

18

7

25

72%

4

3

7

57%

GAY MEN’S HEALTH CRISIS

33

31

64

52%

GLOBAL AIDS ALLIANCE

47

0

47

100%

1

3

4

25%

HARVARD AIDS INSTITUTE

18

0

18

100%

HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP)

37

0

37

100%

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION FLORIDA AIDS ACTION

HARM REDUCTION COALITION

HIV MEDICINE ASSOCIATION

2

0

2

100%

LIFELONG AIDS ALLIANCE

2

11

13

15%

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

16

0

16

100%

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

21

2

23

91%

8

4

12

67%

14

7

21

67%

2

0

2

100%

PROJECT INFORM

11

15

26

42%

SAN FRANCISCO AIDS FOUNDATION

22

57

79

28%

5

0

5

100%

23

27

50

46%

437

305

742

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS NATIONAL MINORITY AIDS COUNCIL NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC TOTAL # MEDIA CITATIONS

59%

AVERAGE

13.7

9.5

23.2

67%

MEDIAN

12.0

3.0

19.5

69%

Table 3: Media Citations Related to Federal HIV Policy Issues vs. Media Citations not related to Federal HIV Policy Issues (universe = all media citations). While both the total number (range 0-47) and proportion (range 0-100%) of all citations related to federal HIV policy issues varied dramatically among organizations, the overall proportion (69%) was high, suggesting a strong focus on federal issues.

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GENERAL INTERNATIONAL

FUNDING

PREVENTION

TREATMENT

CIVIL LIBERTIES

WORKPLACE

INTELLECTUAL PROPERTY

TOTAL: INTERNATIONAL

% OF ALL INTERNATIONAL

INTERNATIONAL POLICY ISSUES

ACT UP PHILADELPHIA

3

2

0

0

1

0

14

20

13%

ADAP WORKING GROUP

0

0

0

0

0

0

0

0

0%

AIDS ACTION COMMITTEE

0

2

0

0

0

0

0

2

1%

AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION

1

2

0

0

0

0

0

3

2%

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

0

0

0

0

0

0

0

0

0%

AIDS FOUNDATION OF CHICAGO

0

1

0

0

0

0

0

1

1%

AIDS HEALTHCARE FOUNDATION

0

2

0

0

0

0

4

6

4%

MEDIA ISSUES: SUMMARY (universe = federal HIV policy citations) ORGANIZATION

AIDS PROJECT LOS ANGELES

0

1

0

0

0

0

0

1

1%

AIDS RESEARCH INSTITUTE

2

1

2

1

0

1

0

7

4%

AIDS TREATMENT AND DATA NETWORK

0

0

0

0

0

0

0

0

0%

AMERICAN FOUNDATION FOR AIDS RESEARCH

0

0

1

0

0

0

0

1

1%

BLACK AIDS INSTITUTE

0

0

0

0

0

0

0

0

0%

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

0

0

0

0

0

0

0

0

0%

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

0

0

0

0

0

0

0

0%

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

3

3

2

0

0

0

0

8

5%

FLORIDA AIDS ACTION

0

0

0

0

0

0

0

0

0%

GAY MEN’S HEALTH CRISIS

3

1

0

0

0

0

0

4

3%

GLOBAL AIDS ALLIANCE

8

28

1

0

0

0

2

39

25%

HARM REDUCTION COALITION

0

0

0

0

0

0

0

0

0%

HARVARD AIDS INSTITUTE

6

9

0

1

0

0

2

18

11%

HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP)

7

16

1

0

1

0

10

35

22%

HIV MEDICINE ASSOCIATION

0

0

0

0

0

0

0

0

0%

LIFELONG AIDS ALLIANCE

0

0

0

0

0

0

0

0

0%

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

0

0

0

0

0

0

0

0

0%

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

0

0

0

1

0

0

0

1

1%

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

0

0

0

0

0

0

0

0

0%

NATIONAL MINORITY AIDS COUNCIL

1

1

0

0

0

0

0

2

1%

NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

0

0

0

0

0

0

0

0

0%

PROJECT INFORM

0

0

0

0

0

0

0

0

0%

SAN FRANCISCO AIDS FOUNDATION

2

5

0

0

0

0

0

7

4%

TREATMENT ACTION GROUP

0

1

0

0

0

0

0

1

1%

WHITMAN-WALKER CLINIC

1

1

0

0

0

0

0

2

1%

TOTAL # MEDIA CITATIONS

37

76

7

3

2

1

32

158

100%

% of ALL (DOMESTIC/INTL) MEDIA CITATIONS

20% 100%

23%

48%

4%

2%

1%

1%

AVERAGE CITATIONS PER ISSUE

1

2

0

0

0

0

1

5

MEDIAN # OF CITATIONS PER ISSUE

0

1

0

0

0

0

0

1

# OF ORGANIZATIONS WITH AT LEAST ONE CITATION

11

16

5

3

2

1

5

18

% OF ORGANIZATIONS WITH AT LEAST ONE CITATION

35%

52%

16%

10%

6%

3%

16%

58%

TABLE 4: Media Issues Analysis (universe: all media citations related to federal HIV policy issues). Among all federal HIV policy media citations, the majority (63%) reflected domestic concerns. While domestic issues covered in the media ran the gamut, the vast majority (nearly three-quarters) concerned one of three topics: 1) general awareness (29% of domestic citations), 2) HIV prevention issues (23%), or 3)

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FEDERAL HIV POLICY ADVOCACY PROJECT

CARE

PREVENTION

CIVIL LBERTIES

FEDERAL COORDINATION

CRIMINAL JUSTICE

DRUG PRICING

HEALTHCARE

ENTITLEMENTS

EDUCATION

SUBSTANCE ABUSE

TOTAL# OF DOMESTIC CITATIONS

TOTAL # OF INTERNATIONAL AND DOMESTIC CITATIONS

% OF ALL CITATIONS

% OF ALL DOMESTIC CITATIONS

GENERAL DOMESTIC

ALL ISSUES

FUNDING

DOMESTIC POLICY ISSUES

1

0

0

0

1

0

0

0

0

0

0

0

2

1%

22

5%

5

0

0

0

0

2

0

1

0

0

0

0

8

3%

8

2%

1

0

0

1

0

0

0

0

0

0

0

0

2

1%

4

1%

5

3

0

1

1

3

0

1

1

0

0

0

15

5%

18

4%

0

2

0

4

0

2

0

0

0

0

0

0

8

3%

8

2%

2

0

0

0

0

1

0

0

0

1

0

0

4

1%

5

1%

2

1

0

2

0

1

0

9

0

0

0

0

15

5%

21

5%

1

6

0

5

0

3

0

1

0

0

0

0

16

6%

17

4%

0

1

0

6

0

2

0

1

2

0

0

0

12

4%

19

4%

4

0

0

0

0

0

0

1

0

1

0

0

6

2%

6

1%

1

7

0

4

0

0

0

0

0

0

0

0

12

4%

13

3%

1

9

0

0

0

0

0

0

0

0

0

0

10

4%

10

2%

0

2

0

0

0

0

0

0

0

0

0

0

2

1%

2

0%

0

0

0

0

0

0

0

0

0

0

0

0

0

0%

0

0%

1

5

0

3

0

0

0

1

0

0

0

0

10

4%

18

4%

0

3

0

1

0

0

0

0

0

0

0

0

4

1%

4

1%

5

5

0

10

2

4

0

2

1

0

0

0

29

11%

33

8%

1

1

0

0

0

0

0

0

0

0

0

0

2

1%

41

10%

0

0

0

1

0

0

0

0

0

0

0

0

1

0%

1

0%

0

0

0

0

0

0

0

0

0

0

0

0

0

0%

18

4%

1

0

0

0

0

0

0

0

1

0

0

0

2

1%

37

9%

0

0

0

0

0

0

0

0

2

0

0

0

2

1%

2

0%

0

1

0

0

0

1

0

0

0

0

0

0

2

1%

2

0%

5

5

1

3

0

0

0

1

0

1

0

0

16

6%

16

4%

6

3

4

0

3

0

0

3

1

0

0

20

7%

21

5%

1

7

0

0

0

0

0

0

0

0

0

0

8

3%

8

2%

1

3

0

4

0

2

2

0

0

0

0

0

12

4%

14

3%

0

2

0

0

0

0

0

0

0

0

0

0

2

1%

2

0%

2

2

0

3

0

2

0

2

0

0

0

0

11

4%

11

3%

3

2

0

4

0

4

0

0

1

1

0

0

15

5%

22

5%

0

0

0

2

0

0

0

2

0

0

0

0

4

1%

5

1%

3

9

1

5

0

2

0

0

1

0

0

0

21

8%

23

5%

52

79

2

63

4

32

2

22

12

5

0

0

273

100%

431

100%

19%

29%

1%

23%

1%

12%

1%

8%

4%

2%

0%

0%

100%

2

2

0

2

0

1

0

1

0

0

0

0

9

13

1

1

2

0

1

0

0

0

0

0

0

0

8

12

21

21

2

18

3

14

1

11

8

5

0

0

30

31

68%

68%

6%

58%

45%

3%

35%

26%

16%

0%

0%

97%

10%

100%

funding for HIV programs (19%). International issues comprised 37% of all federal HIV policy citations. Strikingly, 60% of these were associated with only three organizations (ACT UP, GAA, and Health GAP). Of all international citations, nearly half (48%) were related to funding issues, including the US contribution to a global fund for AIDS, funding for bilateral international programs, or debt relief for poor countries.

FORD FOUNDATION

67

3

ADAP WORKING GROUP

0

AIDS ACTION COMMITTEE

0

AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION

1

SUBTOTAL: FUNDING

FUNDING FOR US INTERNATIONAL PROGRAMS

INTERNATIONAL DEBT RELIEF

GLOBAL FUND FOR AIDS, TB, MALARIA

1

FUNDING, FOREIGN AID

1

SUBTOTAL: GENERAL INTL

US GOV'T WIDE STRATEGIC PLAN/GLOBAL AIDS BILL

1

SOUTH AFRICA EPIDEMIC (EXCEPT DRUG PRICING, GENERICS, INTL TRADE)

UN DECLARATION OF COMMITMENT, UNGASS: GENERAL ASSEMBLY SPECIAL SESSION ON AIDS

ACT UP PHILADELPHIA

INTERNATIONAL EPIDEMIC

ORGANIZATION

GENERAL INTERNATIONAL

MEDIA CITATIONS: INTERNATIONAL ISSUES (DETAIL)

2

2

0 2

1

1

1

2 2

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

0

0

AIDS FOUNDATION OF CHICAGO

0

1

1

AIDS HEALTHCARE FOUNDATION

0

2

2

1

1

0

AIDS PROJECT LOS ANGELES AIDS RESEARCH INSTITUTE

1

2

1

1

1

AIDS TREATMENT AND DATA NETWORK

0

0

AMERICAN FOUNDATION FOR AIDS RESEARCH

0

0

BLACK AIDS INSTITUTE

0

0

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

0

0

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

0

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

1

1

3

1

GAY MEN'S HEALTH CRISIS

1

1

1

GLOBAL AIDS ALLIANCE

2

1

3

2

8

10

11

6

1

1

1

28

0

HARVARD AIDS INSTITUTE 1

1

6

6

5

7

3 0

3 2

HARM REDUCTION COALITION HEALTH GLOBAL ACCESS PROJECT (Health GAP)

1

0

FLORIDA AIDS ACTION

0 8 4

10

1

9 16

2

HIV MEDICINE ASSOCIATION

0

0

LIFELONG AIDS ALLIANCE

0

0

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

0

0

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

0

0

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS NATIONAL MINORITY AIDS COUNCIL

1

NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

0

2

2

3

0

TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC

1 2

6

5

9

15

% of TOTAL INTERNATIONAL MEDIA CITATIONS % of ORGANIZATIONS among all ORGANIZATIONS with INTERNATIONAL CITATIONS

0

0

SAN FRANCISCO AIDS FOUNDATION

# OF ORGANIZATIONS w/CITATIONS

1

1

0

PROJECT INFORM

TOTAL # MEDIA CITATIONS

0

0 1

2

37

1

1

1

1 17

35

9

15

23% 2

5

5

6

5

11 61%

5 1 76 48%

5

6

3

11

16 89%

Table 5: Media citations: international issues (detail). International issues comprised 37% of all federal HIV policy citations. Sixty percent (60%) of these were associated with only three organizations (ACT UP, GAA, and Health GAP). Of all international citations, nearly half (48%) were related to funding issues, including the US contribution to a global fund for AIDS, funding for bilateral international programs, or debt relief for poor countries. While 89% of organizations that had international citations had citations related to funding, 58% of funding citations could be attributed to only two organizations:

68

FEDERAL HIV POLICY ADVOCACY PROJECT

2

1

2

0

0

0

3

0

0

0

0

0

0

0

0

0

0

0

0

1

0

0

0

0

1

0

0

0

0

0

0

0

0

0

0

0

4

0

0

3

0

1

4

6

0

0

1

0

7

0

0

0

0

0

1

0

0

0

0

0

0

0

0

0

0

0

0

2

0

0

0

0

8

0

0

0

0

0

0

0

0

0

0

1

0

0

0

0

0

0

1

0

1

1

0

4

2

2

39

0

0

0

2

2

18

5

1

0

1

0

10

35

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

1

0

0

0

1

1

1

5

0

0

0

0

0

0

0

0

0

0

0

2

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

7

0

0

0

0

0

1

0

0

0

0

0

2

32

158

7

0

3

5 28%

3

0

2

0

3

3 17%

2

1

1%

2%

4% 1

1

1

1

0

6

TOTAL: INTERNATIONAL

0

0

0

20

0

0

1

14 0

0 1

5

0

2

1

9

0

0 2

SUBTOTAL: INTELLECTUAL PROPERTY

0

WTO, WORLD TRADE AGREEMENTS, FTAA, TRIPS

0

DRUG PRICING, GENERICS, PATENT PROTECTION, SOUTH AFRICA, BRAZIL

0

INTELLECTUAL PROPERTY

0

0

0

SUBTOTAL: WORKPLACE

SUBTOTAL: CIVIL LIBERTIES

0

0

BUSINESS, WORKPLACE

CHINA DETENTION OF AIDS ACTIVIST

0

0

CIVIL LIBERTIES, HUMAN RIGHTS

0

0

SUBTOTAL: TREATMENT

0

PREVENTION VS. CARE DEBATE

0

TREATMENT, HEALTHCARE (NEED FOR)

1

SUBTOTAL: PREVENTION

FAMILY PLANNING, 'MEXICO CITY' POLICY

YOUTH

WOMEN, CHILDREN, PERINATAL TRANSMISSION

CONDOMS (YES OR NO?)

HIV PREVENTION (NEED FOR)

1

0

0

2

2 11%

1

1

21

10

1% 1

1 6%

20% 1

5

2

5

18

28% 100%

GAA and Health GAP. Twenty-three percent (23%) of international citations reflected a general concern related to the global AIDS epidemic, or specifically addressed the United Nations General Assembly Special Session (UNGASS) on AIDS, which was held in 2001. International trade issues (including drug patent protections and world trade agreements) were reflected in 20% of international citations.

FORD FOUNDATION

69

3

1

AIDS HEALTHCARE FOUNDATION

1

1

1

MSM

0

AIDS TREATMENT AND DATA NETWORK

4

4

AMERICAN FOUNDATION FOR AIDS RESEARCH

1

BLACK AIDS INSTITUTE

1 1

1

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

0

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

1

4 2

1

1

0

FLORIDA AIDS ACTION GAY MEN'S HEALTH CRISIS

5

5

0

HARVARD AIDS INSTITUTE

0

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

1

1

HIV MEDICINE ASSOCIATION

0

LIFELONG AIDS ALLIANCE

0

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

1

1

1

HARM REDUCTION COALITION

1

5

4

2

1

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

1

1

1

3

6

1

1

6

1

1

1

NATIONAL MINORITY AIDS COUNCIL NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

2

0

PROJECT INFORM

1

SAN FRANCISCO AIDS FOUNDATION

1

2

1

1

3

2

0

TREATMENT ACTION GROUP WHITMAN-WALKER CLINIC 6

9

14

1

1

1

2

3

3

1

2

18

52

6

14

3

9

5

7

2

5

% of TOTAL DOMESTIC CITATIONS

% OF ORGS among ALL ORGs with DOMESTIC CITATIONS

2

2

1

AIDS RESEARCH INSTITUTE

# OF ORGANIZATIONS w/ CITATION

1

2

1

AIDS PROJECT LOS ANGELES

TOTAL # MEDIA CITATIONS

1

0

AIDS FOUNDATION OF CHICAGO

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

1

1 5

1

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

GLOBAL AIDS ALLIANCE

LATINOS

1 1

1

5

4

AIDS ACTION COMMITTEE AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION

1

AFRICAN-AMERICANS

1

1

GENERAL EPI, POPULATION ADVOCACY

ADAP WORKING GROUP

SUBTOTAL: FUNDING

ACT UP PHILADELPHIA

IMPACT OF 9/11 ON AIDS FUNDING

UNINSURED CARE

MINORITY AIDS INITIATIVE (MAI)

HIV PREVENTION, CDC

ADAP: HOUSING AFFORDABILITY FOR AMERICA BILL (HOPWA ADAP SWITCH) AMENDMENT

ADAP

RYAN WHITE CARE ACT

ORGANIZATION

HIV/AIDS FUNDING

MEDIA CITATIONS: DOMESTIC ISSUES (DETAIL) PART 1

2

19% 5

6

5

1

1

1

2

10

21 70%

Table 6: Media Citations: Domestic Issues (detail – part 1). Among general awareness citations, 59% concerned the impact of the HIV epidemic on or the need for services among specific subpopulations, or population-specific advocacy campaigns. Among the 23% of domestic citations related to HIV prevention issues (distinct from funding), almost one-third (30%) related to a group of issues that the advocacy community refers to as “prevention defense” – i.e. defensive advocacy in response to federal audits of HIV prevention programs, reports of wasteful HIV prevention spending, accu-

70

FEDERAL HIV POLICY ADVOCACY PROJECT

1

1

1

3

1

2

1

3

SUBTOTAL: PREVENTION

RISK FACTORS/DRUGS, CIRCUIT PARTIES, INTERNET

SYRINGE EXCHANGE

PERINATAL TRANSMISSION

0

0

1

1

1

1

1

3

4 0

0

1

1

0

0

0

3

7

0

2

9

0

0

2

0

0

0

0

0

5

0

3

0

1

3

5

0

4

1

1

0

0

0

0

0

0

0

0

0

0

0

0

1

0

0

1

0

7

0

3

0

2

0

1

2

0

2

2

0

1

5

RAPID HIV TEST

0

3

5

WELFARE REFORM ACT/ ABSTINENCE ONLY

2

1

2

1

1

5

3

6

4

3

3

3

1 2

4

1

1

1

2 1

2

3

1

4

1

0 2

4

2

0 1

1 3

0

3

1

4

1

2

2 2

21

79

2

2

5

1 2

7

19

4

1

4

3

3

5

2

5

10

63

1% 2

2 7%

10 0

1

70%

1

0

1

21

2

1

9

12

2

2 1

4

29% 1

PREVENTION FOR POSITIVES

0

1

11

CONDOMS (YES OR NO? DO THEY WORK?)

0

3

5

9

FEDERAL AUDITS; HIV PREVENTION MESSAGES; WASTEFUL SPENDING

0

0

3

COMMUNITY PLANNING

0

0

2

2

NEED FOR PREVENTION

0

3

1

HIV PREVENTION PROGRAMS AND ISSUES (NOT FUNDING)

0

6

1

1

SUBTOTAL: CARE PROGRAM

HIV CARE PROGRAMS AND ISSUES (NOT FUNDING)

0

1

3 1

0

1

1 2

SUBTOTAL: GENERAL

WORLD AIDS DAY, 20TH ANNIVERSARY OF AIDS

CELEBRITY AWARENESS CAMPAIGNS

SOUTHERN STATES

YOUNG PEOPLE

NATIVE AMERICANS

WOMEN

3

0

23% 4

2

4

10

3

1

2

2

1

3

4

18 60%

sations of inappropriately sexually explicit HIV prevention messages, etc. Among the nearly one-fifth (19%) of domestic citations related to HIV funding, more than one-third (35%) referred to the impact of the 9/11 terrorist attacks on AIDS funding, while more than one-quarter (27%) referred to the need for funding for a single program: the AIDS Drug Assistance Program (ADAP).

FORD FOUNDATION

71

ADAP WORKING GROUP

0

AIDS ACTION COMMITTEE

0 1

1

AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION

2

3

SUBTOTAL: CRIMINAL JUSTICE

CRIMINAL JUSTICE

SUBTOTAL: COORDINATION

1

PACHA, COBURN; ONAP, O'NEILL, EVERTZ, CARMONA, FRIST, PELOSI

1

FEDERAL COORDINATION/ LEADERSHIP

SUBTOTAL: CIVIL LIBERTIES

ACT UP PHILADELPHIA

PETRELLIS/PASQUARELLI

IMMIGRATION

ADA

CIVIL RIGHTS/CIVIL LIBERTIES

MEDIA CITATIONS: DOMESTIC ISSUES (DETAIL) PART 2

0

0

2

0

0

0

3

0

2

0

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

0

AIDS FOUNDATION OF CHICAGO

0

1

1

0

AIDS HEALTHCARE FOUNDATION

0

1

1

0

AIDS PROJECT LOS ANGELES

0

3

3

0

AIDS RESEARCH INSTITUTE

0

2

0

AIDS TREATMENT AND DATA NETWORK

0

0

0

AMERICAN FOUNDATION FOR AIDS RESEARCH

0

0

0

BLACK AIDS INSTITUTE

0

0

0

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

0

0

0

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

0

0

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

0

0

0

2

2

0

FLORIDA AIDS ACTION GAY MEN'S HEALTH CRISIS

1

2

1

1

3

0

0

4

0

GLOBAL AIDS ALLIANCE

0

0

0

HARM REDUCTION COALITION

0

0

0

HARVARD AIDS INSTITUTE

0

0

0

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

0

0

0

HIV MEDICINE ASSOCIATION

0

0

0

LIFELONG AIDS ALLIANCE

0

1

0

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

0

0

0

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

0

3

3

0

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

0

NATIONAL MINORITY AIDS COUNCIL

0

2

2

NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

0

PROJECT INFORM

0

SAN FRANCISCO AIDS FOUNDATION

0

TREATMENT ACTION GROUP

0

WHITMAN-WALKER CLINIC

0

TOTAL # MEDIA CITATIONS

0

2

1

1

0

2

1

1

% of TOTAL DOMESTIC CITATIONS # OF ORGANIZATIONS w/ CITATION % OF ORGS among ALL ORGs with DOMESTIC CITATIONS

4

1

0

10%

2

0

0

2

2

0

3

4

0

0

0

2

2

0

6

26

32

4

12

1

1% 3

0 2

2

12% 14 40%

2 1%

1

1 3%

Table 7: Media Citations: Domestic Issues (detail – part 2). A smaller yet still substantial portion of domestic media citations (12%) concerned the new Bush administration, which took office in January 2001, at the beginning of the study period. A surprising number of citations (8% of domestic citations) reflected concern about prescription drug pricing, an important, though relatively narrow and shopworn issue that has shown little potential for reform in the past. Certain categories were practically absent: only four citations were related to civil liberties, while only two referred to criminal justice or prison

72

FEDERAL HIV POLICY ADVOCACY PROJECT

1

3

6

1 1

1

TOTAL: DOMESTIC

SUBTOTAL: SUBSTANCE ABUSE

SUBSTANCE ABUSE

1

0

0

0

0

8

0

0

0

0

0

2

1

0

0

0

15

0

0

0

0

0

8

0

0

1

0

0

4

9

0

0

0

0

15

0

0

0

0

16

2

0

0

0

12

1

0

0

6

1

1

1

2

1

1

0

0

0

0

0

0

12

0

0

0

0

0

10

0

0

0

0

0

2

0

0

0

0

0

0

1

0

0

0

0

10

0

0

0

0

4

1

0

0

0

29

0

0

0

0

0

2

0

0

0

0

0

1

0

0

0

0

0

1

0

0

0

2

2

0

0

0

2

0

0

0

0

0

2

1

0

1

1

0

0

16

3

1

1

0

0

20

1

1

0

2

0

1

1

1

1

0

0

0

0

0

8

0

0

0

0

0

12

0

0

0

0

0

2

2

0

0

0

0

11

0

1

0

0

15

0

0

0

0

4

1

1

0

0

0

21

12

0

0

273

0%

100%

0

0

1

1

2

1

SUBTOTAL: EDUCATION

2

0

1

HIV/SEXUALITY EDUCATION

0

0

2

SUBTOTAL: ENTITLEMENTS

0

2

1

MEDICAID/MEDICARE

0

0 2

ENTITLEMENT PROGRAMS

0

1

1

SUBTOTAL: HEALTHCARE

MEDICAL MARIJUANA

TREATMENT GUIDELINES

SMALLPOX, ANTHRAX, VACCINES (FOR HIV POSITIVE PEOPLE)

ACCESS TO CARE: HIV SPECIALISTS

DISPARITIES IN ACCESS TO CARE

HIV TREATMENT/CARE; HEALTHCARE

SUBTOTAL: DRUG PRICING

RX ADVERTISING

DRUG DEVELOPMENT, REGULATION

DRUG DEVELOPMENT, ANTITRUST

DRUG PRICING (DOMESTIC)

DRUG PRICING, INTELLECTUAL PROPERTY

1

0

0 0

12

7

1

2

22

0

8

2

1

2

11

0

6

2

1

1

2

0

5

1

1

1

2

0

5

0

5

4%

8%

37%

1

8 27%

5

0

0

0

0

2% 5 17%

0%

0%

0%

30 100%

issues. There were no citations related either to: 1) school-based HIV education, sexuality or health education (except for articles reflecting a general concern for youth); or 2) the intersection between the HIV and substance abuse epidemics, substance abuse treatment programs or methods, or the HIV-related service needs of substance users.

FORD FOUNDATION

73

BREADTH OF MEDIA COVERAGE

# OF INTL ISSUES W/MEDIA CITATIONS

# OF DOMESTIC ISSUES W/MEDIA CITATIONS

TOTAL # OF ISSUES (OUT OF 19 POSSIBLE) W/MEDIA CITATIONS

AVERAGE # CITATIONS PER # OF INTL ISSUES W/MEDIA CITATIONS

AVERAGE # CITATIONS PER # OF DOMESTIC ISSUES W/MEDIA CITATIONS

AVERAGE # CITATIONS PER # OF ISSUES W/MEDIA CITATIONS

BREADTH AND INTENSITY OF MEDIA COVERAGE

INTENSITY OF MEDIA COVERAGE

ACT UP PHILADELPHIA

4

2

6

5.00

1.00

3.67

ADAP WORKING GROUP

0

3

3

0.00

2.67

2.67

AIDS ACTION COMMITTEE

1

2

3

2.00

1.00

1.33

AIDS ACTION COUNCIL/AIDS ACTION FOUNDATION

2

7

9

1.50

2.14

2.00

(universe = federal HIV policy citations; 19 HIV policy issue categories).

ORGANIZATION

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

0

3

3

0.00

2.67

2.67

AIDS FOUNDATION OF CHICAGO

1

3

4

1.00

1.33

1.25

AIDS HEALTHCARE FOUNDATION

2

5

7

3.00

3.00

3.00

AIDS PROJECT LOS ANGELES

1

5

6

1.00

3.20

2.83

AIDS RESEARCH INSTITUTE

5

5

10

1.40

2.40

1.90

AIDS TREATMENT AND DATA NETWORK

0

3

3

0.00

2.00

2.00

AMERICAN FOUNDATION FOR AIDS RESEARCH

1

3

4

1.00

4.00

3.25

BLACK AIDS INSTITUTE

0

2

2

0.00

5.00

5.00

CENTER FOR COMMUNITY-BASED HEALTH STRATEGIES

0

1

1

0.00

2.00

2.00

COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF

0

0

0

0.00

0.00

0.00

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

3

4

7

2.67

2.50

2.57

FLORIDA AIDS ACTION

0

2

2

0.00

2.00

2.00

GAY MEN'S HEALTH CRISIS

2

7

9

2.00

4.14

3.67

GLOBAL AIDS ALLIANCE

4

2

6

9.75

1.00

6.83

HARM REDUCTION COALITION

0

1

1

0.00

1.00

1.00

HARVARD AIDS INSTITUTE

4

0

4

4.50

0.00

4.50

HEALTH GLOBAL ACCESS PROJECT (HEALTH GAP)

5

2

7

7.00

1.00

5.29

HIV MEDICINE ASSOCIATION

0

1

1

0.00

2.00

2.00

LIFELONG AIDS ALLIANCE

0

2

2

0.00

1.00

1.00

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

0

6

6

0.00

2.67

2.67

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

1

6

7

1.00

3.33

3.00

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

0

2

2

0.00

4.00

4.00

NATIONAL MINORITY AIDS COUNCIL

2

5

7

1.00

2.40

2.00

NATIONAL NATIVE AMERICAN AIDS PREVENTION CENTER

0

1

1

0.00

2.00

2.00

PROJECT INFORM

0

5

5

0.00

2.20

2.20

SAN FRANCISCO AIDS FOUNDATION

2

6

8

3.50

2.50

2.75

TREATMENT ACTION GROUP

1

2

3

1.00

2.00

1.67

WHITMAN-WALKER CLINIC

2

6

8

1.00

3.50

2.88

AVERAGE AMONG ORGANIZATIONS

1.34

3.25

4.59

1.54

2.24

2.67

MEDIAN AMONG ORGANIZATIONS

1

3

4

1

2.67

2.62

Table 8: Breadth and Intensity of Media Coverage (universe = federal HIV policy citations; 19 HIV policy issue categories). Most organizations had media citations related to a relatively narrow range of policy issues (range 1-10, median = 4, out of 19 possible), suggesting a strategic focus on a limited number of issues. Intensity of coverage (range 1-6.83, median = 2.62) was inversely proportional to breadth, probably an indication that agencies chose either to focus heavily on a small number of issues, or less heavily on a wider range of issues. NOTE: grayscale indicates organizations that scored >25th percentile on both breadth and intensity of media coverage.

74

FEDERAL HIV POLICY ADVOCACY PROJECT

5

5

# HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES

DRUG PRICING/ INTERNATIONAL TRADE

5

DEBT RELIEF

GLOBAL APPROPRIATIONS

ACT UP PHILADELPHIA

BUSINESS/WORKPLACE ISSUES

Organization

GLOBAL AIDS BILL

HIV POLICY ISSUE PRIORITIES: INTERNATIONAL

3

ADAP WORKING GROUP

0

AIDS ACTION COUNCIL / AIDS ACTION FOUNDATION

0

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

0

AIDS HEALTHCARE FOUNDATION

5

5

5

3

AIDS PROJECT LOS ANGELES BLACK AIDS INSTITUTE

0 2

2

0

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

5

3

GAY MEN'S HEALTH CRISIS

4

4

3

1

GLOBAL AIDS ALLIANCE

5

5

5

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

5

5

5

2 5

5

4

5

5

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

0

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

0

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

0

NATIONAL MINORITY AIDS COUNCIL

0

PROJECT INFORM

0

SAN FRANCISCO AIDS FOUNDATION

5

5

2

WHITMAN-WALKER CLINIC

0

# ORGANIZATIONS w/ISSUE as HIGH (4) or HIGHEST (5) PRIORITY

7

6

4

% ORGANIZATIONS w/ISSUE as HIGH (4) or HIGHEST (5) PRIORITY

39%

33%

22%

1 6%

2 11%

AVERAGE INTENSITY of EFFORT

4.50

4.25

4.60

5.00

5.00

MEDIAN INTENSITY of EFFORT

5

5

5

5

5

AVERAGE # HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES

1.11

MEDIAN # HIGH (4) OR HIGHEST (5) PRIORITY INTERNATIONAL ISSUES

0

Table 9: HIV Policy Issue Priorities – International. Over one-third of organizations (39%) included an international issue among those that they named as high or highest priorities. Three organizations (ACT UP, GAA, and Health GAP) reported only international issues as high or highest priorities.

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ACT UP PHILADELPHIA

0

ADAP WORKING GROUP

5

AIDS ACTION COUNCIL / AIDS ACTION FOUNDATION

4

4

3

AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

5

AIDS HEALTHCARE FOUNDATION

5

AIDS PROJECT LOS ANGELES

# OF HIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES

IMMIGRATION BAN

PEDIATRIC DRUG RESEARCH/TESTING

NEEDLE EXCHANGE (DC APPROPS)

DRUG PRICING

MEDICAID, ETHA, HEALTHCARE ACCESS

RAPID TESTING/CLIA WAIVER

PREVENTION FOR POSITIVES

PREVENTION DEFENSE/ ABSTINENCE

MANDATORY TESTING (PREGNANT WOMEN/NEWBORNS)

PROGRAM (HRSA) IMPLEMENTATION

APPROPRIATIONS – AIDS PORTFOLIO

APPROPRIATIONS – PROPRIETARY

RELATIONSHIP BUILDING

HIV POLICY ISSUE PRIORITIES: DOMESTIC

4

BLACK AIDS INSTITUTE

3

4

3

5

5

3 4

2

2

3

5 4

2

4

2

3

2

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

3

GAY MEN'S HEALTH CRISIS

3

2

0 5

5

5

1

4

3

GLOBAL AIDS ALLIANCE

0

HEALTH GLOBAL ACCESS PROJECT (Health GAP)

0

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

5

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

3

5

NATIONAL MINORITY AIDS COUNCIL

4

3

PROJECT INFORM

5

3

5

3

5

WHITMAN-WALKER CLINIC # ORGANIZATIONS w/ISSUE as HIGH (4) or HIGHEST (5) PRIORITY % ORGANIZATIONS w/ISSUE as HIGH (4) or HIGHEST (5) PRIORITY

3

4

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

SAN FRANCISCO AIDS FOUNDATION

5

4

8

2

2

3

2

3

3

4

2

3

1

4 5

3

5

3

3

3

2

11% 44% 11% 17%

1

3

6% 17%

2 1

3

5

6% 17% 28%

5 1

2

6% 11%

1 1

0

6%

0%

AVERAGE INTENSITY OF EFFORT

4.50 4.56 3.18 4.00 5.00 3.43 4.00 5.00 3.10 4.00 3.67

5.00 3.00

MEDIAN INTENSITY OF EFFORT

4.5

5

5

3

2

3

3 2

5

4

5

3

4

5

3.5

4

4

3

AVERAGE # OF HIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES

1.78

MEDIAN # OF HIGH (4) OR HIGHEST (5) PRIORITY DOMESTIC ISSUES

2

Table 10: Policy issue priorities – domestic. More than three-quarters (78%) of organizations reported domestic high or highest priority issues, although the number reported by individual organizations was still small (range 0-3, average=1.78). Almost half (44%) of all organizations named proprietary appropriations (appropriations for a single line in the federal budget, or for a limited range of lines) as a high or highest priority.

76

FEDERAL HIV POLICY ADVOCACY PROJECT

CRITICAL GAPS IN HIV ADVOCACY CAPACITY AS IDENTIFIED BY ADVOCACY ORGANIZATIONS

ACT UP PHILADELPHIA

Y

ADAP WORKING GROUP

Y

ACTIVISM, COMMUNITY/GRASSROOTS ORGANIZING

BETTER STRATEGY (WORKING WITH GOP), TARGETING, BETTER PLANNING

WASHINGTON, BROAD-BASED POLICY ADVOCACY

SPECIAL POPS: IDUs, PRISONERS, VETERANS, MENTALLY ILL

CRITICAL STRATEGY GAPS IN HIV ADVOCACY CAPACITY IDENTIFIED BY ADVOCACY ORGANIZATIONS

WELFARE REFORM/ POVERTY ISSUES

GLOBAL AIDS PROGRAMS

CIVIL RIGHTS/ADA

PREVENTION

ORGANIZATION

HEALTHCARE ACCESS, ENTITLEMENT PROGRAMS (MEDICAID, MEDICARE)

CRITICAL ISSUE GAPS IN HIV ADVOCACY CAPACITY IDENTIFIED BY ADVOCACY ORGANIZATIONS

Y

AIDS ACTION COUNCIL / AIDS ACTION FOUNDATION AIDS ALLIANCE FOR CHILDREN, YOUTH AND FAMILIES

Y

Y

AIDS HEALTHCARE FOUNDATION

Y

Y

Y Y

AIDS PROJECT LOS ANGELES

Y

BLACK AIDS INSTITUTE

Y

ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

Y

GAY MEN'S HEALTH CRISIS

Y Y

Y

Y Y

Y

GLOBAL AIDS ALLIANCE HEALTH GLOBAL ACCESS PROJECT (Health GAP)

Y

Y

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

Y

Y

NATIONAL ASSOCIATION OF PEOPLE WITH AIDS

Y

Y

Y

Y

Y

NATIONAL BLACK LEADERSHIP COMMISSION ON AIDS

Y

NATIONAL MINORITY AIDS COUNCIL PROJECT INFORM

Y

SAN FRANCISCO AIDS FOUNDATION

Y

Y

Y

Y

Y

WHITMAN-WALKER CLINIC TOTAL # ORGANIZATIONS % OF ORGANIZATIONS

Y Y Y

9

8

2

2

2

2

6

4

2

47%

42%

11%

11%

11%

11%

32%

21%

11%

Table 11: Critical Gaps in HIV Advocacy Capacity as Identified by Advocacy Organizations. Organizations were asked to name issues (without prompting) that constituted critical gaps in HIV advocacy capacity, without regard to their own organization’s priorities. Almost half (47%) of organizations named entitlement programs (Medicaid and Medicare) and healthcare access issues as critical advocacy gaps; 42% cited HIV prevention and related issues. Organizations also conceptualized critical HIV advocacy gaps in terms of strategy or functional capacity. One-third (32%) of organizations regarded the lack of broad, Washington-based HIV policy advocacy capacity as a critical gap, a view held by organizations both inside and outside the Beltway.

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Chronology of Events: Global AIDS Initiative

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DATE

ITEM

NOTES

01/26/01

President Bush reimposes ‘Mexico City’ policy

Restricts international family planning programs from discussing abortion

02/16/01

Sen. Boxer and Rep. Lowey introduce companion bills: Global Democracy Promotion Act of 2001

Overturn ‘Mexico City’ policy

02/20/01

Bush moves Office of National AIDS Policy into the White House

02/21/01

US Trade Rep Zoellick commits to Clinton policies relaxing patent protections for health emergencies

03/06/01

Feinstein/Feingold: Global Access to HIV Treatment Act of 2001 (S463)

03/28/01

Frist (subcommittee on Africa, Foreign Relations) receives GAO report on USAID’s AIDS programs

04/06/01

Frist amendment to budget bill provides $700m over two years

Total US: $1.1b by 2003 FY02: $200m; FY03: $500m “international fund”

04/09/01

Bush appoints Scott Evertz as Director, National AIDS Policy

Announces intention to broaden scope of office to global HIV epidemic

04/26/01

Kofi Annan calls for $7-10b global AIDS fund

04/26/01

Lee/Waters introduce Debt Cancellation for HIV/AIDS Act (HR1567)

05/03/01

House International Relations Committee passes Lee amendment to Foreign Relations bill to overturn ‘Mexico City’ policy

05/09/01

Annan meets with Powell and Thompson to discuss GAF conribution

05/11/01

Bush pledges $200m (first contribution) to GAF

05/21/01

Yale students and faculty (including PAF Chair David Kessler) criticize Bush $200m GAF contribution

Advocate $2.5b

05/23/01

Powell, Natsios visit Africa

5/23-29/01; visit Mali, Kenya, Uganda, S. Africa

05/26/01

Natsios announces international plan to involve Christian and Muslim religious leaders through “preaching” abstinence and monogamy; literature promoting abstinence will be distributed at religious services to “supplement” existing U.S.funded condom-based programs.

Natsios: “Condoms don’t always work – the best thing to do is behave yourself.”

06/06/01

Hyde introduces Global Access to HIV/AIDS Prevention, Awareness, Education, and Treatment Act of 2001 (HR2069)

$469m for USAID programs; $50m ARV treatment pilot; authorizes multilateral contributions

06/06/01

20th Anniversary of AIDS

06/07/01

House International Relations Committee holds hearings; Natsios testifies that Africans don’t have a Western sense of time

FEDERAL HIV POLICY ADVOCACY PROJECT

Restricts ability of US to enforce patent protections

To relieve debt for heavily indebted countries, or those heavily impacted by HIV/AIDS; expands HIPC program

Andrew Natsios, USAID; Scott Evertz (withdrawn); Senegal Ambassador Seck; Joseph Sills, Corporate Council on Africa; Rupert Schofield, Foundation for Int’l Community Assistance Charles Dokmo, Opportunity International; Paul Zeitz, Global AIDS Alliance

DATE

ITEM

NOTES

06/13/01

GAO issues report on UNAIDS

Frist had requested; report says agency has shifted international AIDS efforts to a multisectoral approach; but has failed to integrate programs at the country level

06/14/01

Frist introduces International Infectious Diseases Control Act (S1032); Helms/Kerry/Leahy cosponsor

$200m FY02; $300m FY03 – global trust fund administered by World Bank

06/25/01

UNGASS

Powell pushes for greater EU contributions to GAF

06/27/01

HR2069 passes committee (compromise between Hyde and Lee and Lantos)

$1.36b ($560 USAID; $750 GAF); $50m pilot ARV program; global health advisory board; eliminate 25% cap on US contributions

06/27/01

House Foreign Ops subcommittee votes to appropriate $474m for global AIDS

Includes $100m for GAF

07/11/01

Senate passes $6.5b supplemental appropriations bill

$100m more for GAF

07/11/01

House Approps Committee passes $15.2 foreign aid bill

$474m for global AIDS, including $100m for GAF

07/18/01

GAA, Health GAP and 30 other orgs send letter to Bush advocating debt relief

Bush is to attend G8 meeting

07/20/01

Congress passes $6.5b supplemental approps bill

$100m more for GAF; Bush signs 7/26/01

07/25/01

House rejects Lee amendment to $15.2b foreign aid bill to move $60m from foreign drug interdiction to global AIDS

07/26/01

Frist/Clinton introduce GLIDER (Global Leadership in Developing and Expanded Response) Act (S1230)

$850m through 06 to coordinate HHS/Pentagon/State/Labor

07/26/01

House passes $15.2 foreign aid bill; several amendments to increase amounts fail

$474 for global AIDS ($100m for GAF)

07/27/01

Senate Approps Committee passes $15.6b foreign-aid bill

$450m for global AIDS; $175m for GAF; moves the money from foreign drug interdiction programs

08/02/01

Senate Foreign Relations Committee approves Global Democracy Promotion Act of 2001 (S367)

09/11/01

Terrorist attacks in New York City, Washington, D.C.

09/27/01

The Congressional Black Caucus Health Brain Trust Convenes The HIV/AIDS Epidemic 20 Years Later: The Struggle Continues. Three panels: HIV/AIDS in theUS: Special Populations; HIV/AIDS in the Caribbean; HIV/AIDS in Africa

Michael Riggs chairs Africa panel; speakers include Rep. Lee, Mr. Dellums, and Roberto Teixeira, Director of the National AIDS Program in Brazil (who discusses ARV treatment in a resource poor setting); Percy Wilson, Corporate Council on AIDS; Adam Taylor, Global Justice/ Student Global AIDS Campaign; Conchi Sabadi, Pfizer

10/17/01

Lee circulates letter asking for $1b emergency funding for GAF

Leach, Morella, Conyers, Nadler co-sign letter

10/26/01

Senate passes $15.6b foreign approps bill

$415 for global; $40 for GAF (+$100m for Labor/HHS and $50 already appropriated) = $190m

11/08/01

70 members of Congress (Lee/Leahy) push Bush to contribute $1.2b to GAF; 130 non-governmental organizations and 35 pop stars

GAA and Health GAP

11/13/01

Frist/Kerry announce that they will head new bipartisan task force on global HIV/AIDS; announce intention to develop ‘comprehensive’ legislation

Headquartered at Center for Strategic and International Studies

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DATE

ITEM

NOTES

11/29/01

Corzine introduces Microbicides Development Act of 2002 (S1752)

Cosponsored by Snowe, Cantwell, Dodd, Leahy

12/11/01

HR2069 (Hyde bill) passes House

$1.3b for int’l AIDS: $750 for GAF, $485 for bilateral; $50m pilot to provide ARVs in developing countries.

01/16/02

Frist visits Africa

Sudan, Tanzania, Kenya, Uganda

1/28/02

FY03 budget includes $200m for GAF

1/31/02

CSIS Task Force on HIV/AIDS convenes symposium on public/private partnerships in Botswana; lunch discussion on Resource Mobilization

Luncheon chaired by Todd Summers; panelists include Helene Gayle, Bill Steiger, Jack Chow (canceled), Ron Dellums

02/13/02

Senate Foreign Relations Committee holds hearings: Halting the Spread of HIV/AIDS

Thompson; State Dept. Under Secretary for Global Affairs Paula Dobriansky; Princeton Lyman, CSIS Task Force Work Group Chair; Peter Piot, UNAIDS

02/13/02

CSIS Task Force On HIV/AIDS, Work Group on Resource Mobilization and Coordination issue paper: The Global Fund to Fight HIV/AIDS, Malaria, and TB: Successes and Challenges

Todd Summers, Jennifer Cooke, Steven Morrison authors

02/13/02

Durbin (D/IL) Global Coordination of HIV/AIDS Response (CARE) Act (S1936) AIDS Task Force

Increase coordination between U.S. agencies; $2.5b

02/14/02

Senate Foreign Relations Committee holds hearings: Responding to Africa’s HIV/AIDS Crisis – the Role of Prevention and Treatment

Witnesses: Eugene McCray, Global AIDS Program, CDC; Anne Peterson, Bureau of Global Health, USAID; Jeffrey Sachs, Center for International Development, Harvard University; Jim Yong Kim, Program in Infectious Disease and Social Change, Harvard Medical School, Boston, MA; and Martin Vorster, Mahyeno Tributary Mamelodi, South Africa.

02/19/02

Samaritan’s Purse convenes “Prescription for Hope” conference in Washington, D.C.

Frist, Helms, Natsios are speakers; Helms says he is ashamed he did not address AIDS earlier

3/04/02

Daschle advocates in letter to Bush for bilateral and GAF money in Defense supplemental approps bill

03/14/02

Congressional Economic Leadership Institute sponsors luncheon on the Global Fund, in collaboration with CSIS

03/15/02

Bono meets with Helms, Frist, DeWine, and Santorum

03/15/02

Bush announces “Compact for Global Development,” which would increase foreign aid by $5b over three years, including GAF

Anticipates Monterrey UN development conference

03/25/02

Helms/Frist announce intention to introduce amendment to Homeland Security Bill adding $500m to global AIDS

Announced in Helms Washington Post op-ed; main goal would be MCT

03/25/02

Student Global AIDS campaign conducts action at Kerry’s office to demand $2.5b US GAF contribution

Anticipates global AIDS legislation

4/02/02

Thompson tours Africa; accompanied by Barbara Lee, Fauci, others

Mozambique, Botswana, Ivory Coast, South Africa

FEDERAL HIV POLICY ADVOCACY PROJECT

Rep. Kolbe, chairman, House Appropriations Subcommittee on Foreign Operations, and Rep. McDermott, House Committee on Ways and Means moderate. Panelists: Paul Ehmer, Global Bureau, USAID; Mary Partlow, Global Health Council; Todd Summers, chair, CSIS Task Global Fund; Jeff Lamb, The World Bank. Paul Davis (Health Gap), Michael Weinstein (AHF) offer comments.

DATE

ITEM

NOTES

4/10/02

Capitol rally “A Day of Hope: Fight AIDS in Africa and Worldwide” seeking $750m in supplemental bill; $2.5b in 03 budget

Co-sponsors: Health GAP, Act Up/NY and Philly, Jubillee USA and Artists for a New South Africa (Danny Glover). Lee (D/CA), Conyers (D/MI), Leach (R/IA) attend.

4/12/02

Senate HELP Committee holds hearings on AIDS

Witnesses: Elton John; Sandy Thurman, International AIDS Trust; Peter Mugyenyi, Joint Clinical Research Center, Kampala, Uganda; Allan Rosenfield, Columbia University; Deborah Dortzbach, HIV/AIDS Programs, World Relief International.

04/17/02

House International Relations Committee holds hearings on HIV/AIDS orphans

Anne Peterson, USAID; Father D’Agostino, Nyumbani Orphanage, Kenya; Nathanial Dunigan, AIDChile, Uganda; Ken Casey, WorldVision; Laelia Gilborn, Population Council

4/24/02

US delivers initial $300m to GAF

Thompson promises $500m by end of year

04/28/02

Student Global AIDS Campaign conducts rally in Boston City Hall Plaza

Demands that Kerry increase GAF contribution to $2.5b

05/06/02

Durbin, Spector propose $700m + for GAF in FY03; seek to amend $27b Senate emergency supplemental appropriations bill

5/15/02

Frist/Kerry introduce United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2002 (S2525), with Helms’ support

$1 billion for GAF; five-year plan; Global AIDS Coordinator at State

5/24/02

House passes $29.4b supplemental appropriations bill (HR4775)

Includes $200 additional HIV for GAF; Lowey amendment at markup to add $500m fails

5/24/02

Treasury Secretary O’Neill/Bono visit Africa

South Africa, Ethiopia, Ghana

6/07/02

Senate passes $31.5b supplemental spending bill – includes $200m for GAF

Frist/Helms had proposed $500m amendment, then scaled back to $200 ($100m for perinatal transmission, $100m for GAF) at OMB request; Specter/Durbin potential amendment proposes $700m

06/13/02

Center for Strategic and International Studies HIV/AIDS Task Force; moderated by co-chairs Frist and Kerry. Discussants: Richard Feachem, Chrispus Kiyonga, Global Fund; Peter Piot, UNAIDS; and Ayanda Ntsaluba, South African Health Director General. CSIS issues three papers: • Expanding Antiretroviral Treatment in Developing Countries Creates Critical New Challenges (Steve Morrison) • The Destabilizing Impact of HIV/AIDS: First Wave Hits Eastern and Southern Africa; Second Wave Threatens India, Russia, China, Ethiopia, and Nigeria (Mark Schnieder, Michael Moody) • The Global Fund to Fight HIV/AIDS, TB, and Malaria: Challenges and Opportunities (Todd Summers)

Nils Daulaire (GHC), Eric Goosby (Pangaea), David Gold (IAVI) offer comments

06/14/02

Senate Foreign Relations Committee marks up S2525 with no amendments

06/17/02

National Intelligence Council says AIDS is ‘rapidly worsening’

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DATE

ITEM

NOTES

6/19/02

Bush announces $500m to fight perinatal transmission in Africa/Caribbean; Thompson, Powell, Fauci, USAID Natsios, Frist

$500/3 years; PAF “worked closely” with admin; includes $200m spending previously authorized by Senate

6/19/02

Kennedy/Frist introduce International AIDS Treatment and Prevention Act of 2002 (S2649)

Provides significant new authorities for HHS agencies to act internationally

6/21/02

Powell convenes intragovernmental brainstorming session on public/private partnerships

6/27/02

Senate HELP committee passes S2649: International AIDS Treatment and Prevention Act of 2002 (Kennedy/Frist).

HHS authority to implement HIV prevention, treatment, care and support services in developing countries; $400m to CDC; $40m to HRSAto develop health care systems and $50 million to train health care workers; $10m to Labor for workplace programs.

07/12/02

International AIDS conference in Barcelona, Spain

HHS Sec. Tommy Thompson shouted down by activists

07/15/02

Senate unanimously passes HR2069

Substitutes S2525 (Kerry/Frist) and S2469 (Kennedy/Frist) 2525 – $4.5b for GAF in 03/04; 5 year plan 2649 – authorizes HHS, Labor to fund AIDS programs in developing countries

07/18/02

Congress passes $28.9b supplemental appropriations bill

$200m for GAF included in $5b of ‘contingent’ funding, of which President must use all or none

07/18/02

Senate Foreign Ops Approps Subcommittee passes $16.35b bill

Includes $750m for AIDS ($200m for GAF)

7/19/02

Evertz moved to HHS; PACHA Executive Director Pat Ware replaced

07/22/02

White House names Joe O’Neill as Director, Office of National AIDS Policy

Replaces Scott Evertz, who was moved to HHS global program

07/23/02

12 Republican Representatives request that HHS Sec. Thompson account for all U.S. funding that went to support Barcelona conference and provide a list of individuals who received grants from the government to attend.

Representatives are “shocked” that Vatican was “uninvited” and that “[n]one of the major speeches or lectures dealt with faith’s role” in combating HIV/AIDS.

07/23/02

Roland Foster (staff, House Government Reform subcommittee on criminal justice, drug policy and human resources) asks HHS’s legislative affairs office how much federal funding the 12 U.S. AIDS organizations that participated in the Barcelona protest receive. Six days later, expands number 16.

Organizations include GMHC, APLA, AIDS Vaccine Advocacy Coalition and Treatment Action Group.

8/05/02

Bush Administration stalls delivery of approved GAF grants, seeking new mechanism

8/13/02

Bush declines $5.1b contingency spending in 02 supplemental bill, including $200m for GAF

Requests new supplemental appropriation

08/23/02

Daschle, Bingaman, Reid and Nighthorse Campbell travel to Africa for 10-day fact-finding mission

South Africa, Kenya, Botswana and Nigeria

09/04/02

Bush asks Congress to allocate $1b, including $200m for international HIV/AIDS

09/09/02

House Approps Foreign Operations subcommittee passes $16.55b FY03 bill

FEDERAL HIV POLICY ADVOCACY PROJECT

Includes $786m for international HIV/AIDS ($250m for GAF)

DATE

ITEM

NOTES

9/13/02

Byrd/Stevens amend 03 Interior approps bill to restore $937m in rejected 02 contingency spending, including $200m HIV

Money to be spent as supplemental 02 appropriation

09/25/02

Reps. Millender-McDonald, McDermott, Leach and Morella sponsor briefing on MCT best practices

Features keynote by Anthony Fauci (NIAID) and Anne Peterson (USAID); Kate Carr (PAF) participates on panel

09/30/02

IMF committee recommends policy to allow developing nations with large debts to declare bankruptcy to negotiate reduced repayment terms

Activists had staged protests at IMF and World Bank meetings with stickers that stated, “IMF – cancel poor country debt, fight AIDS”

10/31/02

ICRW and GAAN sent a letter, signed by more than 30 AIDS groups, to Thompson and Powell urging them to develop a “comprehensive U.S. global AIDS plan” by the end of year.

11/01/02

GAA and 34 other national organizations request that Congress work toward “swift passage” of U.S. Leadership Against HIV/AIDS, TB and Malaria Act of 2002

11/15/02

Deputy Assistant Secretary of State for Health and Science Jack Chow visits Ethiopia

Robert Blair, the State Department’s adviser for international health

11/26/02

AIDS activists march in downtown Washington, D.C., demanding more money for international and domestic HIV/AIDS programs; call on Bush administration to spend $2.5 billion on Global AIDS Initiatives.

March is organized by Health GAP, Act Up New York and Philadelphia.

12/01/02

Bono kicks off 11-City HIV/AIDS Tour sponsored by DATA (Debt, AIDS, Trade in Africa). Also appears on “Larry King Live.”

Lincoln, NE; Iowa City, IA; Chicago, IL; Indianapolis, IN; Cincinnati, OH; Louisville, KY; Nashville, TN.

12/22/02

32 members of Congressional Black Caucus urge Bush to “launch a major new U.S. initiative to fight AIDS” and “respond on an appropriate scale to address the greatest plague in recorded history;” requests $2.5 billion for international AIDS programs – 50% for GAF.

Also asks to prioritize treatment, expand programs for AIDS orphans and cancel debt for “impoverished countries” to “free up” HIV/AIDS funding.

12/23/02

Bush postpones trip to Africa

12/23/02

Frist is approved as Senate Majority Leader; receives support from GHC and AHF.

01/24/03

Senate passes $390b FY03 omnibus appropriations bill; includes Durbin/DeWine amendment to add $180m in emergency funds for global HIV/AIDS.

$100 for GAF

01/27/03

100 AIDS health professionals send letter to Bush encouraging him to commit more resources for HIV/AIDS; sponsored by Health Action AIDS, a project of Physicians for Human Rights in conjunction with Partners in Health.

Signatories include: Antonio Novello and Julius Richmond; James Curran; Nils Daulaire (GHC); Paul Farmer, Partners in Health; Eric Goosby, Pangaea; Mathilde Krim, AMFAR; Peter Lamptey, FHI; Richard Marlink, Harvard AIDS Institute; Paul Volberding, International AIDS Society.

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DATE

ITEM

NOTES

1/28/03

Bush $15b Emergency Plan for AIDS Relief proposal

$15b/5 years; $10b new money; $200m to global fund, the rest through USAID; family planning groups can apply for money as long as they keep HIV programs separate

01/30/03

Durbin introduces S250: Global Coordination of HIV/AIDS Response Act (CARE) to authorize $3.35b FY04 to combat HIV/AIDS worldwide and coordinate government response.

01/31/03

GAF elects Tommy Thompson as Chair

02/03/03

FY04 budget, includes $450m toward $15b, five-year HIV/AIDS program; $200m for GAF; $300m MCT.

Total: $1.8b. GAF: $100m HHS, $100m USAID; MCT: w/$200 from 02 = $500 commitment. GHC says some of money was cut from maternal health and child survival programs.

02/12/03

House-Senate compromise on $396b omnibus appropriations bill includes $1.4b for international AIDS programs

Includes $100m of $180m Durbin/DeWine amendment

02/14/03

Frist withdraws from HR2069 (S2525 and S2649) from last Congress

Support weakened, WH version of bill

02/18/03

Republican Senate legislative agenda includes AIDS bill among top ten bills (Frist)

$15b for AIDS

02/21/03

President signs $396b omnibus appropriations bill for FY03

02/26/03

Feingold and Durbin visit Africa

03/10/03

AIDS advocates demonstrate at Senate Majority Leader Frist’s Nashville office; another group of 20 protestors demonstrate outside Frist’s Washington, D.C., home at 6 a.m.

03/17/03

Hyde/Lantos (w/Lee and Weldon) introduce HR1298: $3b annually for five years; up to $1b for GAF

55% would be earmarked for treatment; no more than 33% of total GAF budget; ABC approach. No ‘Mexico City’ policy.

03/20/03

Senate Foreign Relations delays consideration of Lugar bill

Top Senate Republicans reportedly concerned about lack of abstinence provisions

03/20/03

House International Relations Committee delays markup of HR1298

03/25/03

Bono meets with Sen. Lugar to discuss AIDS bill

03/27/03

Senate HELP Committee holds hearings on international HIV prevention programs

03/28/03

Senate rejects Kerry amendment to 04 budget bill to allocate $725m to GAF; Frist opposes.

04/01

Bush requests $668m increase to HHS global AIDS budget; $450 in foreign aid

FEDERAL HIV POLICY ADVOCACY PROJECT

Considers recent research indicating that unsafe medical practices, not unprotected sex, account for the majority of African HIV/AIDS cases

DATE

ITEM

NOTES

04/03/03

House International Relations Committee marks up HR1298: • Pitts (R/PA) – prioritize abstinence (fails) • Lee (D/CA) – condoms are also priority • Pitts (R/PA) – permit faith orgs to favor abstinence (fails) • Rohrbacher (R/CA) – 10% funding to orphans • Smith (R/NJ) – prohibits funding groups that do not explicitly oppose sex trafficking, prostitution • Smith (R/MI) – more funding later (fails) • Brown( D/OH) – USAID to show more accountability among TB programs • Napolitano (D/CA) – priority to groups that already provide mother-to-child prev • Berman (D/CA) – recognize importance of Medicines for Malaria • Flake (R/AZ) – reduce GAF funding proportionately to amount provided to countries on terrorism list • McCollom (D/MI) – physician’s assistants in pilot programs • Davis (R/VA) – study of impact of condoms on HPV

04/16/03

Tommy Thompson is interrupted by protestors at luncheon. ACT UP Philadelphia wants $15b Bush pledge to go to GAF

04/18/03

Rep. Pitts says House Energy and Commerce will draft competing bill to HR1298

Concern is that HR1298 doesn’t stress abstinence or provide faith groups with conscience clause

04/29/03

Bush supports HR1298 in Rose Garden ceremony; congressional aides tell Washington Post WH will support bill even without “anti-condom” amendments

GHC, Pedaids support Bush; Concerned Women of America and Family Research Council support greater emphasis on abstinence, treatment

05/01/03

Washington Post reports support for Bush’s HIV/AIDS initiative from pharmaceutical companies and other firms with a “financial stake in combating the disease.”

Drug makers pay up to $40,000 each to join two coalitions, one of which is the Coalition for AIDS Relief in Africa, co-chaired by J.C. Watts.

05/01/03

House passes HR1298 with conservative amendments. • Pitts (R/PA) – abstinence amendment • Smith (R/NJ) – “conscience” clause permitting religious opt-out of ABC • Crowley (D/NY) – teaching men and boys about gender equality, respect • Jackson Lee (D/TX) – encourage business, private groups • Stearns (R/FL) – Global AIDS Fund salaries • Lantos – pilot program for families, women’s inheritance rights • Ballance (D/NC) – genetically altered food aid • Biggert (R/IL) – PR campaign for global fund, website • Tauzin (R/LA) – proportional response, plus IOM study on prev interventions

$15b/5 years ($1b 04 to global AIDS Fund, up to 1/3 of all contributions); ABC model (1/3 to abstinence); 55% tx, 20% prevention; 15% palliative care; 10% orphans; allows separately funded abortions; global AIDS fund task force

5/7/03

Lugar introduces United States Emergency Plan for AIDS Relief Act of 2003 (S1009) with five co-sponsors Biden, Kerry, Sarbanes, Daschle, and Murray

05/08/03

13 conservative groups urge Frist to pass HR1298 without amendments.

05/09/03

Durbin launches bipartisan, bicameral Global AIDS Emergency Task Force to strengthen U.S. response to pandemic; 32 Members volunteer

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DATE

ITEM

05/13/03

Frist announces intention to bring HR1298 to Senate, bypassing separate Foreign Relations Committee bill (Lugar)

05/16/03

Senate passes HR1298 by voice vote; includes amendment (Biden/Santorum) to increase funding for debt relief in countries hit hardest by HIV/AIDS; other amendments fail: • Feinstein (D/CA) – remove 1/3 abstinence • Kennedy (D/MA) – buy AVRs at lowest price • Durbin (D/IL) – increase global fund contribution • Dorgan (D/ND) – $250 food aid

5/21/03

House passes HR1298 as amended by Senate

5/27/03

President signs HR1298

FEDERAL HIV POLICY ADVOCACY PROJECT

NOTES

Bill signing attended by Samaritan’s Purse; IPAAC; AIDS Action Council; UNAIDS; AHF; PAF

Interviews INDIVIDUAL

ORGANIZATION

TITLE

Anderson, Terje

National Association of People With AIDS

Executive Director

Arnold, Bill

ADAP Working Group

Director

Baker, Cornelius

Whitman-Walker Clinic

Executive Director

Bass, Pat

Communities Advocating for Emergency AIDS Relief (CAEAR) Coalition

Chair

Bell, John

ACT UP Philadelphia

Member

Bilimoria, Natasha

Elizabeth Glaser Pediatric AIDS Foundation

Senior Public Policy Officer

Carr, Kate

Elizabeth Glaser Pediatric AIDS Foundation

Executive Director

Christen, Pat

San Francisco AIDS Foundation

Executive Director

Clary, Ryan

Project Inform

Senior Policy Advocate

Coates, Thomas

AIDS Research Institute, University of California San Francisco

Director

Davis, Paul (x2)

Health GAP (Global Access Project)

Advocacy Campaign Coordinator

Del Monte, Mark

AIDS Alliance for Children Youth and Families

Director of Policy and Government Affairs

Desai, Nisha

House International Relations Committee

Former Professional Staff Member (minority)

Dillon, Fred (x2)

San Francisco AIDS Foundation

Director of Public Policy and Communications

Dinsmore, Allison

Health GAP (Global Access Project)

Donnelly, Anne

Project Inform

Director of Public Policy

Fauci, Anthony

National Institute of Allergy and Infectious Diseases

Director

Franco, Adolfo

House International Relations Committee

Former Professional Staff Member (majority)

Fraser-Howze, Debra

National Black Leadership Commission on AIDS

Executive Director

Gartner, David

Global AIDS Alliance

Policy Director

Gonsalves, Gregg

Gay Men’s Health Crisis

Director of Treatment and Prevention Advocacy

Grinstead, Olga

AIDS Research Institute, University of California San Francisco

Hanen, Laura

National Alliance of State and Territorial AIDS Directors

Director of Government Relations

Harvey, David

AIDS Alliance for Children Youth and Families

Executive Director

Hawkins, Patricia

Whitman-Walker Clinic

Director of External Affairs

Hermes, Kris

ACT UP Philadelphia

Member

Hilton, Philip

National Black Leadership Commission on AIDS

Senior Vice President, Fund Development and Community Affairs

Hopkins, Earnest

San Francisco AIDS Foundation

Director of Federal Affairs

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Interviews

88

INDIVIDUAL

ORGANIZATION

TITLE

Isaac, Mark (x2)

Elizabeth Glaser Pediatric AIDS Foundation

Vice President for Governmental and Public Affairs

James, John

ACT UP Philadelphia

Member

Johnson, Ronald

Gay Men’s Health Crisis

Associate Executive Director

Kates, Jennifer

Kaiser Family Foundation

Director, HIV Policy

Krauss, Kate

ACT UP Philadelphia

Member

LaPointe, Ellen

Project Inform

Executive Director

Levi, Jeffrey

Center for Health Services Research and Policy, George Washington University

Managing Director

Martin, Marsha

AIDS Action Council

Executive Director

Montoya, Daniel

AIDS Project Los Angeles

Director of Public Policy

Morin, Steve

AIDS Research Institute, University of California San Francisco

Director, Public Research Center; Director, Policy and Ethics Core, Center for AIDS Prevention Studies

O’Neill, Joseph

Office of National AIDS Policy

Director

Oliveira, Ana

Gay Men’s Health Crisis

Executive Director

Portillo, César (x2)

AIDS Healthcare Foundation

Director of Government Relations

Riggs, Michael

Congresswoman Barbara Lee

Former Senior Legislative Assistant

Russell, Asia

Health GAP (Global Access Project)

Advocacy Campaign Coordinator

Salazar, Javier

National Minority AIDS Council

Acting Director, Government Relations and Public Policy

Scofield, Julie

National Alliance of State and Territorial AIDS Directors

Executive Director

Smith, Peter

House International Relations Committee

Professional Staff Member (majority)

Stetson, Nancy

Senate Foreign Relations Committee

Professional Staff Member (02 majority/03 minority)

Stevralia, Leah

American Foundation for AIDS Research

Acting Director of Public Policy

Stratman, Sam

House International Relations Committee

Communications Director (majority)

Sumilas, Michele

Global Health Council

Director of Government Relations

Summers, Todd

Progressive Health Partners

President

Thomas, Laura

Communities Advocating for Emergency AIDS Relief (CAEAR) Coalition

Co-Chair, Public Policy Committee

Thompson, Craig

AIDS Project Los Angeles

Executive Director

Weinstein, Michael

AIDS Healthcare Foundation

Executive Director

Wilson, Phill

Black AIDS Institute (formerly African-American AIDS Training and Policy Institute

Executive Director

Zeitz, Paul (x2)

Global AIDS Alliance

Executive Director

FEDERAL HIV POLICY ADVOCACY PROJECT

Acronyms AAC

AIDS Action Council (Washington, D.C.)

AACYF

AIDS Alliance for Children, Youth and Families (Washington, D.C.)

ACT UP

AIDS Coalition to Unleash Power (Philadelphia)

ADAP

AIDS Drug Assistance Program

AHF

AIDS Healthcare Foundation (Los Angeles)

AMFAR

American Foundation for AIDS Research (New York)

APLA

AIDS Project Los Angeles

ARI

AIDS Research Institute, University of California San Francisco

ARV

Antiretroviral

AWG

ADAP Working Group (Washington, D.C.)

BAI

Black AIDS Institute (formerly African-American AIDS Policy and Training Institute, Los Angeles)

CAEAR

Communities Advocating for Emergency AIDS Relief (Washington, D.C.)

CARA

Coalition for AIDS Relief in Africa

CDC

Centers for Disease Control and Prevention

CSIS

Center for Strategic and International Studies

FAPP

Federal AIDS Policy Partnership

GAA

Global AIDS Alliance (Washington, D.C.)

GHC

Global Health Council (Washington, D.C.)

GMHC

Gay Men’s Health Crisis (New York)

Health GAP

Health Global Access Project

HELP

Senate Committee on Health, Education, Labor and Pensions

HHS

Department of Health and Human Services

HIRC

House International Relations Committee

IIWG

NORA International Issues Working Group

MAI

Minority AIDS Initiative

MCT

Mother-to-child transmission

NAPWA

National Association of People with AIDS (Washington, D.C.)

NASTAD

National Alliance of State and Territorial AIDS Directors (Washington, D.C.)

NBLCA

National Black Leadership Commission on AIDS (New York)

NIAID

National Institute of Allergy and Infectious Diseases

NIH

National Institutes of Health

NMAC

National Minority AIDS Council (Washington, D.C.)

NORA

National Organizations Responding to AIDS (Washington, D.C.)

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Glossary

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OMB

Office of Management and Budget

PACHA

Presidential Advisory Council on HIV and AIDS

PAF

Elizabeth Glaser Pediatric AIDS Foundation (Washington, D.C.)

PI

Project Inform (San Francisco)

SFAF

San Francisco AIDS Foundation

SFRC

Senate Foreign Relations Committee

UNAIDS

Joint United Nations Programme on AIDS

UNGASS

United Nations General Assembly Special Session on HIV/AIDS

USAID

United States Agency for International Development

WWC

Whitman-Walker Clinic (Washington, D.C.)

FEDERAL HIV POLICY ADVOCACY PROJECT

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