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Despite political odds, victories abound in 104th Congress

October 25, 1996

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Despite seemingly impossible political odds, significant AIDS public policy victories were achieved in the U.S. Congress' tumultuous 104th session. AIDS advocates across the nation feared the worst when Republicans took control of Congress in November 1994. Early congressional actions calling for funding cuts in AIDS housing, HIV prevention, and the Ryan White CARE Act seemed to confirm those early concerns. Yet, in the final analysis, the Clinton administration and key advocates on the Hill, both Democrats and Republicans, helped us to prevent the elimination of key AIDS programs and to achieve important gains.

The block granting of Medicaid, which would have allowed states to define benefits packages as well as program eligibility, did not occur. Medicaid remains the most important provider of medical care for people living with HIV and AIDS, providing health care for 53 percent of adults and over 90 percent of children living with this disease. In the next year, AIDS advocates will be vigilant as states apply for Medicaid "waivers" that many in the AIDS community fear could make these programs even less responsive to the needs of people living with HIV and AIDS.

Additionally, President Clinton has discussed a per capita cap proposal to limit Medicaid costs. If any such legislation is introduced, AIDS advocates will join advocates for the disabled people who suffer from chronic illnesses to ensure that they are not "capped" out of the care they need. Given the challenge of ensuring access to life prolonging drugs to all people living with HIV and AIDS, we must proactively advocate for expansions in the Medicaid program to ensure low-income HIV-positive individuals have access to primary care and prescription drugs.

The enactment of the Kennedy-Kassebaum bill, which provides for the portability of health insurance coverage, represents another, albeit, limited achievement for people living with HIV and AIDS. Under this law, someone who already has been covered by their job's health insurance can begin a new job with a different insurance carrier without being subject to a new pre-existing condition waiting period. The law, however, does nothing for people who have been out of work and whose insurance has lapsed; nor will it help those who have never had insurance. It also does nothing about the cost of health insurance. These incremental reforms, however, may serve as a foundation for broader health insurance reform in coming years.

Another important achievement this year was the derailment of Republican initiatives to deregulate the U.S. Food and Drug Administration (FDA). In the last few years, the FDA has become increasingly responsive to the needs of people with chronic and life-threatening diseases by making sure that drugs showing promise were sped through the system. Despite this, several key Republicans in Congress proposed giving the pharmaceutical industry increased powers to sell drugs outside the FDA's system. This would have forced people living with HIV and AIDS to decide which drugs to take without knowing their efficacy or safety.

Significant gains were also made in funding for AIDS programs. AIDS advocates achieved dramatic increases in fiscal year 1997 (FY 97) funding for the Ryan White CARE Act. CARE Act funding was increased by $239 million, over $100 million more that the President had originally requested for FY 97. One of the greatest victories was the $115 million increase in funding for the AIDS Drug Assistance Program (ADAP) to provide funds for states to purchase AIDS drugs. While this additional funding will not be enough to solve ADAP problems in most states, it may be enough to buy some breathing room until advocates and health officials can create some longer-term solutions.

Funding for AIDS research at the National Institutes of Health (NIH) was increased by $93.9 million for a total of over $1.5 billion, about $70 million more than President Clinton had requested. When NIH was last reauthorized in 1994, an outcome was the creation of the Consolidated Budget for AIDS Research to be administered by the Office of AIDS Research (OAR), which allowed the OAR to ensure that AIDS research was conducted according to a strategic plan and to hold the various institutes accountable for how they spent their AIDS research dollars. In the 1996 appropriations bill, Labor and Health and Human Services Appropriations Chairman John Porter (R-Ill.) eliminated the consolidated AIDS budget and thus severely hampered the OAR's ability to carry out its strategic plan. The end of the 104th Congress also resulted in a compromise solution to the "consolidated budget for AIDS research" problem : all AIDS funds will be funneled through the OAR and the Director of the OAR has the authority to transfer up to 3 percent of all NIH AIDS research dollars from institute to institute throughout the year in order to take advantage of research opportunities.

In other good news, Congress approved a $32.9 million increase in HIV prevention at the Centers for Disease Control and Prevention (CDC). After taking a $6 million cut last year, these new dollars will allow CDC to provide more resources to state and local health departments and community-based agencies to meet unmet prevention needs, particularly for groups at greatest risk.

Unfortunately the introduction of Rep. Tom Coburn's (R-Okla.) HIV Prevention Act of 1996 threatens to divert scarce prevention dollars from effective, community-based programs that help change risk behaviors to ineffective, costly and punitive mandatory testing and names provisions that will only discourage individuals at greatest risk from seeking testing and early intervention care. Rep. Coburn's bill requires states to implement measures such as mandatory names reporting, partner notification and mandatory testing of hospital patients and health care workers. His bill is likely to be introduced the 105th Congress.

The Housing Opportunities for People With AIDS (HOPWA), which provides grants to cities and states to provide housing and support services to people living with HIV and AIDS, is slated to receive an additional $25 million in 1997. HOPWA has long been the step child of our national effort to combat the AIDS epidemic and as a result has been level-funded repeatedly, and is the target for cuts in funding and elimination. Last year, Congress attempted to gut this program, but after massive community action the program was saved, though it suffered a large funding cut in the battle. This year, after intense community pressure the Clinton administration revised its request to include $25 million extra for the program.

Unfortunately, the administration's proposal for increased HOPWA funding came too late to influence the appropriations process and HOPWA funding remained at $171 million in the House and Senate bills. Undeterred, AIDS advocates across the country worked aggressively to build bipartisan support in Congress for a funding increase to the program. In the end, the extra $25 million was made available for HOPWA in the conference report. A $25 million increase for HOPWA will allow cities and states to provide housing services to an additional 6,725 individuals living with HIV/AIDS and their families.

In the FY 1996 Defense Authorization, Rep. Robert Dornan (R-Calif.) succeeded in attaching a provision to discharge over 1,000 honorable members of the armed forces solely because they have HIV. President Clinton reluctantly agreed to sign that bill into law. However, AIDS advocates led a heroic campaign to repeal that provision and defeat Dornan's blatant discrimination. In the end, the Congress supported the fundamental principle that discrimination in employment on the bases of HIV status is wrong, even in the U.S. military and removed the provision.

The AIDS community was also successful in removing provisions in the Immigration Reform bill that would have denied both legal and undocumented immigrants from receiving any HIV treatment. During the conference committee to wrap up the immigration bill, Republican members held a closed-door meeting and inserted a new provision that allowed testing and treatment for all communicable diseases with the exception of HIV disease; this meant that documented immigrants would have been tested for HIV, but could not receive any treatment. Undocumented people would have been denied both testing and treatment.

The AIDS community moved into high gear, arguing that these provisions blatantly discriminated against legal immigrants and undocumented people living with HIV and AIDS. With the help of a serious veto threat by the Administration and assistance from many members of Congress, the provisions were removed. Another provision that could have had a negative impact on the lives of many people living with HIV would have deported documented, or legal, immigrants who had used public benefits for more than 12 months. This provision was also removed in final negotiations.

While the above provisions were removed, many AIDS advocates believe that the immigration and welfare provisions that passed the 104th Congress could put many people in jeopardy. The HIV epidemic is growing fastest among the poorest American residents. Welfare reforms will take away many structural supports for people living with HIV and their families. Although some of the most restrictive HIV provisions were removed, the inability of many people to access important public benefit programs such as Medicaid is likely to place severe strains on other fragile public health and care services, including programs under the Ryan White CARE Act.

When the 105th legislative session of Congress begins, advocates will have to build on their successes as we face new challenges in ensuring access to care and treatment for all people living with HIV.

Gary Rose is Treatment and Research Representative at AIDS Action Council, the only national organization devoted solely to advocating on behalf of all Americans living with HIV and AIDS and 1,400 community-based AIDS service organizations that serve them.

For more information, contact:
AIDS Action Council
1875 Connecticut Avenue NW #700
Washington DC 20009
202-986-1300, extension 3053
202-986-1345 (fax)
202-332-9614 (tty)

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by AIDS Action Council.
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