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AIDS Action (AAC)

ESTABLISHED: 1984
EMPLOYEES: 20
MEMBERS: 3,200 community-based organizations

Contact Information:
ADDRESS: 1875 Connecticut Ave. NW #700 Washington, DC 20009
PHONE: (202) 986-1300
TDD (HEARING IMPAIRED): (202) 332-9614
FAX: (202) 986-1345
E-MAIL: aidsaction@aidsaction.org
URL: http://www.aidsaction.org
EXECUTIVE DIRECTOR: Daniel Zingale

WHAT IS ITS MISSION?

According to the organization, "Aids Action is dedicated to defeating the AIDS epidemic and improving the quality of life for hundreds of thousands of HIV-infected Americans." Founded in 1984, AIDS Action advocates, at the federal level, for more effective AIDS policy, legislation, and funding. Nearly one million Americans are believed to be infected with HIV.

HOW IS IT STRUCTURED?

AIDS Action is the union of AIDS Action Council, a 501(c)(4) organization and the AIDS Action Foundation, a tax-exempt 501(c)(3) organization. The organization is split as such because of federal laws that restrict the activities of tax-exempt and taxable organizations. Therefore, AIDS Action Council (AAC) advocates for a comprehensive federal AIDS policy, and AIDS Action Foundation supports the work of the council through policy research, media advocacy, information dissemination, grassroots outreach, and education. AIDS Action is a network of over 3,200 community-based organizations and represents the diversity of people affected by HIV/AIDS in the United States. Member organizations include AIDS service providers, public clinics, state and local health departments, university and hospital departments and programs, and other AIDS advocates such as the Gay Men's Health Crisis of New York City; the Samaritan Housing Project of Fort Worth, Texas; the Alaskan AIDS Assistance Association of Anchorage; and the Mountain State AIDS Network of Morgantown, West Virginia.

AIDS Action is headquartered in Washington, D.C., and has no branches or chapters. It is headed by an executive director and two deputy executive directors, one for operations and development and one for programs. Also at headquarters reside four major departments: Government Affairs, which monitors policy and lobbies; Communications, which creates press releases, other communications, and acts as a liaison to the media; Operations and Development, which supports the structure of the organization and pursues fund raising and membership; and Finance and Administration, which provides accounting and administrative services.

AIDS Action Council is governed by a 30-member board of directors; a 13-member board of directors heads AIDS Action Foundation. Member organizations appoint representatives to the AIDS Action Council Board and to the AIDS Action Public Policy Committee.

PRIMARY FUNCTIONS

The main function of AIDS Action is to advocate at the federal level for effective AIDS policy, legislation, and funding, with special emphasis on the research and development of new treatments for AIDS. Up until the early 1990s, when AIDS Action began treatment-advocacy projects, few AIDS organizations focused on issues of drug development, science, or management of treatment. Instead, efforts were focused on funding, prevention, and services.

To this end, AAC works to educate policymakers about the needs of HIV/AIDS carriers in relation to: access to sufficient drug and health care treatments; coordinated research needs and opportunities; federal funding needs; discrimination; and education and prevention efforts. AAC is active through the entire policy development process. Staff monitor policy, testify at hearings, create press releases, write position statements, and continuously organize at the grassroots level to shape AAC's agenda. Specifically, AAC administers a community outreach program that works with organizations on the local level to help them lobby for funding and to effectively communicate with federal agencies.

Other efforts focus on fighting HIV/AIDS-based discrimination. According to AIDS Action, AIDS/HIV carriers are at risk of losing their homes, jobs, military careers, health insurance, and families. The organization works to improve this situation by acting as a watchdog and monitoring legislative, judicial, and regulatory developments in the civil rights arena. The organization interprets new policies or court decisions for the public and the media.

To garner support for its initiatives, AIDS Action builds coalitions between both member and nonmember organizations. An example of such a coalition is the National Organizations Responding to AIDS (NORA), a group of more than 175 national health care groups, civil liberties groups, women's groups, minority groups, and gay groups. NORA formulates long-range strategy regarding AIDS and advocates for and monitors AIDS-related federal legislation. AIDS Action also coordinates the Patient's Coalition (a group of chronic-disease organizations and activists) and the AIDS Drug Assistance Program (ADAP) Working Group, a coalition of AIDS activists and organizations, pharmaceutical companies, and government officials that work together on treatment-accessibility issues.

AIDS Action produces a number of educational and informational resources including: brochures, fact sheets, question-and-answer sheets, reports, and monographs. These are available to community organizations or individuals. A large information initiative is the AIDS Action Network, which is a national link for 1,400 community-based organizations (although not necessarily AIDS Action members) who are involved in AIDS advocacy efforts at the federal level. AIDS Action provides the AIDS Action Network with weekly Action Alerts that not only detail the current status of AIDS legislation and congressional votes, but also suggest action for the network organizations, their clients, staff, and peers. AIDS Action Network organizations are also informed of relevant funding opportunities and deadlines for applying.

PROGRAMS

Among the AAC's various programs and inititiatives is the Treatment and Research Advocacy Program, which is dedicated to finding effective treatments for AIDS that will cure and halt the progression of HIV. Through this program AIDS Action works with Congress, the National Institutes of Health, the Food and Drug Administration (FDA), and pharmaceutical companies to coordinate research agendas, secure funding, get treatments to those who need them, and pursue the development of effective drugs.

AIDS Action manages the Pedro Zamora Public Policy Fellowship Program, which provides young adults, particularly those of color, with an opportunity to learn about and participate in the development of federal HIV/AIDS policy. Specifically, the fellowship program focuses on education and prevention, opposes legislative efforts to restrict the content of HIV-prevention materials, supports access to condoms for young men and prisoners, advocates for community needle-exchange programs to prevent the spread of HIV/AIDS, and seeks increased funding for federal Centers for Disease Control (CDC) and prevention. The program is named for Pedro Zamora, an advocate for AIDS education and a highly publicized member of the AIDS Action Board, who died of AIDS in 1994.

BUDGET INFORMATION

AIDS Action funding comes from organizations, individuals, and foundations; the organization receives no federal donations. For tax purposes, budgets for AIDS Action Council and AIDS Action Foundation are separate entities.

For the foundation, contributions and grants make up the largest source of revenue. In 1996, AIDS Action Foundation brought in __BODY__,151,039. Of that figure, $509,546 came in the form of contributions, and $408,338 was supplied in grants. The foundation also received revenues of $57,912 in 1996 which were specifically designated to the Pedro Zamora Memorial Fund. Foundation expenses in 1996 totaled __BODY__,264,037. Eighty-one percent of that went toward program expenses.

AIDS Action Council has a relatively smaller revenue and expense budget. In 1996 the council had revenues of $814,897 and expenses of $757,329. The council's largest source of revenues came from memberships ($758,291) and the largest expenses were program costs ($629,895).

HISTORY

AIDS Action was founded in 1984 by activists who were concerned with what they perceived as the U.S. government's indifference to the rising AIDS epidemic.

Three years after news of the epidemic was released, the number of AIDS cases in the nation had increased to over 4,000. The founders of AIDS Action believed that a federal AIDS policy needed to be directed and that a supportive policy needed to be advocated for. Also, these advocates saw a need for better coordination of AIDS advocates everywhere.

In the 1990s, several events helped shape the direction of an AIDS policy. Ryan White, a teenager with AIDS who attracted much media coverage, died in April of 1990. AIDS-advocate groups, including AIDS Action, used the opportunity to lobby for, and successfully pass, the Ryan White Care Act of 1990. The legislation provided emergency monies to communities and programs impacted by AIDS. AIDS Action and other groups were also successful in achieving a reauthorization of the bill on May 1, 1996.

The 1990s also brought a focus on treatment programs. According to the AAC, research and development of new treatments was proceeding at a fast pace, but the U.S. government was slow in making these treatments available. AIDS Action and the Human Rights Campaign Fund (a gay rights group) advocated for the use of these progressive new treatments, and worked to convince policymakers that the will and the dollars were available to bring treatments to the public.

In 1992 AIDS Action turned its attention toward improving its grassroots organizing, and started a Community Organizing and Education department. The department worked with local organizations to teach them the intricacies of lobbying policymakers and dealing with federal agencies. Particular cities with large AIDS populations, such as Cleveland, Ohio, and San Diego, California, were targeted first.

AIDS Action continued to advocate on a number of AIDS-related fronts during the 1990s. During the 1996 legislative session, AIDS Action was successful in several of its endeavors. The organization aided in the repeal of a military HIV ban that was part of a provision sponsored by Rep. Robert Dornan (R-Calif.) in the 1996 $265 billion defense authorization bill. The provision would have resulted in the discharge of 1,049 HIV-positive members of the U.S. Armed Services. AIDS Action also succeeded in keeping the legislature from eliminating established AIDS Education & Training Centers (AETCs).

On October 18, 1996, Daniel Zingale became executive director of AIDS Action. Zingale had served as political director of the Human Rights Campaign, the largest lesbian and gay political organization in the United States. In his new position, Zingale defined his first challenges as forging partnerships with traditional civil rights groups. By doing so, Zingale believed that AIDS Action could better address underserved communities and help them gain access to promising, yet expensive HIV treatments.

Another strategic move was the October 2, 1997, appointment of Jeff Jacobs to the legislative director position. Jacobs, a leading public health expert, had been a senior lobbyist to Congress during the Clinton administration on issues including: Medicaid, Medicare, FDA, child health, and AIDS. By hiring a health expert, the organization attempted to end the perception that AIDS and public health policy were at odds.

CURRENT POLITICAL ISSUES

The various initiatives of AIDS Action help shape federal policy to improve the lives of those with HIV/AIDS. Many efforts relate to health care access, such as the fight to retain Medicaid coverage for HIV/AIDS treatments, which was threatened as part of federal health care reform initiatives. In 1997 AIDS Action and other advocacy groups were successful in their efforts to prevent a restructuring of the Medicaid program. The restructuring would have included funding cuts as well as a per capita cap that would have been easily exceeded by HIV/AIDS patients because of the high cost connected with HIV/AIDS treatment. Also, in 1997 AIDS Action worked with the Clinton administration to put a "Medicaid expansion initiative" into place. This measure expanded coverage to HIV/AIDS people who were formerly not eligible for Medicaid benefits.

Another concern is AIDS/HIV testing. AIDS Action argues that mandatory testing in health care settings would allow providers to refuse treatment to infected people in need. Additionally, mandatory testing would allow health care providers to maintain a database of those who tested positive, raising personal-privacy issues. The HIV Prevention Act of 1997, which provides for mandatory testing, was authored by Representative Tom Coburn (also a doctor) and endorsed by the American Medical Association. AIDS Action was successful in getting Coburn to delay action on the bill that, according to AIDS Action, would mandate a database of people with HIV without a good reason and would allow doctors to refuse treatment to those who had not been tested.

AIDS Action considers prevention and education the strongest weapons in the fight against HIV/AIDS. AIDS Action maintains that one of the most effective prevention techniques is needle-exchange programs, which allow intravenous drug users to trade in used needles for clean ones. AIDS advocacy groups, and some health providers say needle exchanges reduce HIV infection among intravenous drug users without increasing drug use. According to AIDS Action, needle-exchange programs have the support of the American Medical Association, the American Public Health Association, and the American Bar Association. A February 1997 Department of Health and Human Services report supported these claims that syringe-exchange programs reduce HIV transmission among intravenous drug users, their sexual partners, and their children, without encouraging drug use.

Case Study: Federal Funding of Needle Exchanges

In 1998 more than one hundred needle-exchange programs existed in approximately half of the United States, however they are funded by the few cities, states, or private foundations that wish to support such a controversial prevention method. No federal funding has ever been provided for such programs.

In September 1997, AIDS advocate groups were alarmed as a legislative amendment to the FY 1998 Labor/Health and Human Services (HHS) appropriations bill was initiated by Rep. Tom Coburn (R-Okla.) and sponsored by Reps. Dennis Hastert (R-Ill.) and Roger Wicker (R-Miss.). The legislation, if passed, would repeal the authority of the secretary of HHS to permit federal funding for needle-exchange programs.

AIDS Action monitored the process of the legislation, including tracking which congressional members would be serving on conference committees that would be discussing House and Senate versions of the appropriations bill. The organization made committee member names known to AIDS Action members, so that members could contact their representatives and request that the amendment be dropped. AIDS Action also carried out a media blitz, detailing the status of the legislation through press releases. The organization also worked with Miss America Kate Shindle to convince her to publicly support needle-exchange programs. However, in a blow to AIDS advocacy groups, the amendment was attached to the FY 1998 Appropriations bill, which passed in the House by a vote of 266 to 158. The bill was passed with the provision that Donna Shalala, secretary of HHS, make a decision by March 31, 1998, on whether to ban federal funding for needle-exchange programs.

AIDS groups lost their second chance for victory on the issue when Shalala decided not to fund the programs with federal money. Additionally, in April 1998 President Bill Clinton angered AIDS advocacy groups by stating that he continued to support needle-exchange programs but would not federally fund them.

Public Impact

Needle-exchange programs address the largest identifiable subset of people at risk of contracting HIV/AIDS—intravenous drug users. Among men, intravenous drug use is the second-largest cause of transmission; the first is sexual contact. Among women it ranks first. While the opposition disagrees, AIDS Action holds that such programs decrease the rate of the spread of HIV/AIDS among intravenous-drug users as well as their spouses, partners, and unborn children. If this is true, federal funding would make more needle-exchange programs possible and decrease the spread of HIV/AIDS. Needle exchanges paired with drug rehabilitation referral programs may even help decrease levels of drug use.

Additionally, AIDS organizations claim needle-exchange programs are cost effective and cite an average annual cost of $20,000 to $100,000 for a local program, as opposed to $120,000 to treat one person with HIV/AIDS. However, if needle exchanges were federally funded, opponents would surely be vocal in their opposition to where their tax dollars are being spent. A Family Research Council survey showed 62 percent of respondents oppose needle-exchange programs.

FUTURE DIRECTIONS

According to the organization, one of the challenges AIDS Action faces is dispelling the general perception that "AIDS is over." In particular the organization has the goal of "reinventing" the current Medicaid system. According to AIDS Action, new drug therapies that may possibly prevent the onset of full-blown AIDS have given hope to the one million Americans who are HIV-positive. However, Medicaid, the health care program for the economically disadvantaged, does not provide access to the health care and drugs that prevent full-blown AIDS until one develops full-blown AIDS.

To address this, AIDS Action has begun working with other advocacy groups to develop ways to expand Medicaid and allow more low-income Americans with HIV to access care and therapies. This initiative, endorsed by Vice President Al Gore, will be headed by a collaboration among AIDS Action, community-based service organizations, the Health Care Financing Administration, and the Office of Management and Budget. Some strategies already identified, but not implemented, include: developing a process that expands Medicaid eligibility, taking into account the unique environment of individual states; soliciting ongoing input from stakeholders on improving the Medicaid program; and developing databases to measure costs and projections.

GROUP RESOURCES

A broad range of information, including an archive of articles, press releases, and state-specific AIDS/HIV information can be accessed from AIDS Action's Web site at http://www.aidsaction.org. AIDS Action publications (including the AIDS Action Quarterly newsletter) may be ordered by mail or e-mail (accessible from the Internet site), at aidsaction@aidsaction.org. Public inquiry is also fielded from AIDS Action headquarters at (202) 986-1300.

GROUP PUBLICATIONS

Through AIDS Action, more than a dozen fact sheets, question-and-answer sheets, reports, monographs, and brochures are available; among these are the "AIDS Fact Book," "Blueprint for Reforming Federal AIDS Prevention Programs," and "Housing: Meeting the Needs of People with HIV/AIDS." For material availability and pricing, contact AIDS Action Publications, 1875 Connecticut Ave. NW, #700, Washington, DC 20009; (202) 986-1300.

BIBLIOGRAPHY

Connole, Patrick. "Lawmakers Urge End to Ban on Needle Exchange Funds." Reuters, 27 March 1998.

Gallagher, John. "At Last, A Compromise Kept? (Federal AIDS Funding in America)." The Advocate, 16 November 1993.

——. "The New Crisis Facing AIDS Organizations: Adapt or Die." The Advocate, 27 May 1997.

Horowitz, Craig. "Has AIDS Won?" New York, 20 February 1995.

Kocieniewski, David. "Hard Line on Needle Exchanges." New York Times, 2 February 1999.

Merson, Michael H. "Returning Home: Reflections on the USA's Response to the HIV/AIDS Epidemic." The Lancet, 15 June 1996.

Moss, J. Jennings. "Weak Medicine; First National Plan to Battle AIDS Lacks Substance." The Advocate, 4 February 1997.

Rogers, David E., and June E. Osborn. "AIDS Policy: Two Divisive Issues." JAMA, The Journal of the American Medical Association , 28 July 1993.