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Time to Get Involved, Again

August 2001

The federal government's response to the HIV/AIDS epidemic in the United States has improved greatly over the past 20 years although there are still many challenges. In the earliest years, it was often hard enough simply to have key policymakers utter the word "AIDS" and acknowledge that there was a problem. Driven by the devastation of a deadly epidemic and confronted with a lack of treatment options, people living with HIV/AIDS and their advocates took up the fight for a reasonable government response. At the same time, we were forced to develop an unprecedented community care structure. Federal advocacy focused with urgency on researcher and regulatory reforms and securing funding for research, care, treatment, prevention, and housing programs. At the same time, we had to fight many attempts at passing harmful or discriminatory legislation and to guarantee protection from institutional and private bias.

In many ways, HIV/AIDS advocates combined tactics and strategies from other movements to create a comprehensive model for successful healthcare advocacy. These tactics included educating ourselves about the policy, research and drug development processes, lobbying, analyzing and working to develop reasonable policy, grassroots organizing, media advocacy, and direct action. These efforts combined to produce many important advances in patient's rights, research, drug approval, and access to treatment and healthcare.

Some of the hard won results include the formal declaration of the right of patients to import drugs otherwise not available to them (1985). Congress approved $30 million for delivery of AZT, the first drug approved to fight HIV, in 1987. In 1989, many government research meetings and advisory boards were opened to the patient community. The Food and Drug Administration (FDA) shortened the drug approval process in 1987, 1989 and 1991 in response to pressure and proposals created by HIV/AIDS activists. In 1990, the Ryan White Comprehensive AIDS Relief Emergency (CARE) Act was passed, providing direct funding to areas of the country heavily affected by the epidemic and supporting the community based structure that was filling the gaps in traditional healthcare. In 1994, community prevention planning was put in place through the Centers for Disease Control and Prevention (CDC). In 1997, President Bill Clinton challenged the scientific community to move more quickly in the search for a vaccine. In 1998, members of the Congressional Black Caucus, led by Representatives Maxine Waters and Louis Stokes, put the Minority AIDS Initiative in place, directing funding toward heavily impacted communities of color. In the late 1990s, people living with HIV/AIDS, U.S. activists and activists in other countries began to push the U.S. to respond to the international epidemic. In 2000, the FDA put in place the Clinical Hold Rule which allows the agency to delay or suspend any clinical trial found to be excluding women (or men) because of their "reproductive potential."

However, for all the hard won victories spurred by people living with HIV and their advocates, we have had limited success in addressing the social realities underlying and driving the epidemic. Government still refuses to deal effectively with the politics of racial and gender inequity, sexuality, drug use, poverty and general equity in access to healthcare. For example, though scientific studies have shown for the past ten years that needle exchange helps prevent HIV disease, the federal government won't fund it. Publicly funded prevention efforts continue to lack the courage to address the needs of gay men and others. The Bush administration appears to be advocating a move back toward failed policies promoting abstinence from sex as the gold standard in prevention tactics. Although it has long been reported that African Americans have borne a heavy burden in the HIV epidemic -- disproportionate to their numbers in the general population -- we have yet to effectively address disparities in access to quality healthcare for African Americans and other communities of color. Violence against women continues to increase. As people with HIV in the US live longer, these social inequities and the effects of poverty often pose a greater, or at least a more immediate, challenge than HIV disease. In addition to addressing HIV disease, we must continue to partner with those working on broader issues of healthcare access and inequities.

This year we face perhaps one of our biggest challenges in US HIV/AIDS advocacy. At the same time that so much work remains to be done, we have to ensure we don't lose ground in the care and support programs so many have struggled to put in place. We can't allow the Bush administration to turn back gains already made in funding for US HIV/AIDS programs. While President Bush has made a verbal commitment to fighting HIV/AIDS, his recently released budget proposal for Fiscal Year 2002 does not live up to his words. In particular, his proposed budget calls for no increase to the Ryan White CARE Act, which funds treatment and healthcare services including the AIDS Drug Assistance Program (ADAP). This marks the first time since the CARE Act became law that a President hasn't proposed an increase. With the growing number of people needing services and the rising cost of healthcare and treatments, a flat-funding request actually translates into a cut in CARE funding.

This is especially problematic as ADAPs nationwide are currently reporting difficulties providing adequate services. In some states, these programs never were able to reach and serve all those in need, and with flat funding, unmet need will grow as many states cut back on their coverage. Last year, ADAP federal funding fell $60 million short of the projected amount needed to maintain adequate services. According to a recent report by the National Alliance of State and Territorial Directors (NASTAD), ten states (AL, AR, GA, IN, KY, ME, MT, OK, SC and SD) have closed enrollment to new clients. Seven more (ID, FL, MD, MO, OR, RI and WV) are expected to implement waiting lists or other restrictions by the end of September. Even states with the most comprehensive, well-financed ADAPs such as California, New York, and Pennsylvania have indicated they may need to place restrictions on their programs. Without a sufficient increase in ADAP funding, people with HIV/AIDS across the country will find it much more difficult to access treatments.

Equally troubling is that the President is also asking for no increase to the Congressional Black Caucus Minority HIV/AIDS Initiative, which funds care and prevention services in communities of color.

Fortunately, the President's budget does include increases for some programs. While increases in one area do not make up for lack of funding in others, it's important to note the positive part of the President's request. He is asking for an 11.5% increase for HIV/AIDS research at the National Institutes of Health (NIH). However, that figure doesn't match the overall 13.5% increase that the NIH is proposed to receive. We must protect the increase in research funding and ask that it be proportional to the overall increase. The proposed budget also provides modest (but insufficient) increases for the Housing Opportunities for People With AIDS (HOPWA) program and CDC HIV prevention programs.

This is not a time to rest on our laurels. It is clear that past advances can be reversed and future gains made more difficult when the administration or Congress changes. Today, we must remember our past and what it took to achieve our earlier victories. This means a renewed commitment to organizing across communities of people living with HIV, letter writing, lobbying, policy work, and, when necessary, direct action. We can't take for granted that the administration will share our values and goals. We need to continue work within the U.S. with renewed commitment, even as many activists begin to work on international issues.

What can you do as an individual to effect policy and funding change at the federal level? Ask the national and state HIV/AIDS groups that you're connected with what they do to support appropriate federal funding and HIV/AIDS policy. Find out if you can join their efforts. Many get involved by joining TAN, Project Inform's Treatment Action Network. TAN members receive regular policy updates and alerts detailing and supporting individual actions such as letter writing, emails and phone calls to their elected officials and other decision makers. For more information, call Project Inform's Hotline. People can also volunteer for and support the advocacy work of their local organizations. Together, we moved mountains in putting AIDS in the forefront of American politics. Working together, we can move them again.

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