This document provides background information and summarizes the debate over appropriations for the AIDS Drug Assistance Program. The links to the left will lead you to public documents that we have found.
Pharmacological treatments for AIDS have changed dramatically in recent years. Early courses of treatment focused largely on palliatives for the last months of life. Over time AIDS drugs have become much more effective and have been successful in significantly extending the life of those who are treated early in the course of the disease. The research and development costs of AIDS drugs are very high, however, and the retail price of these drugs is beyond the reach of many of those infected with the virus.
To address this problem, Title II of the Ryan White Act allocates funds for drugs for those who don't have adequate insurance (or any insurance at all). The AIDS Drug Assistance Program (ADAP) has become a lifeline to those afflicted with the disease and has broad support in the Congress. The funds are allocated to 52 ADAP units in the states, Washington, D.C., and territories administered by the United States. These ADAP units, in turn, allocate money to state and community based programs enrolling clients in need of assistance.
Despite the widespread support for the Ryan White Act, the amount of money appropriated each year is subject to the normal push and pull of the congressional budget process. There is lots of competition for funds for fighting diseases and supporters of the ADAP program lobby vigorously for adequate appropriations. A formal coalition, the ADAP Working Group, spearheads the effort on behalf of Title II. It is composed of 34 member organizations, including such pharmaceutical giants as Glaxo Wellcome, Bristol-Myers Squibb, Hoffman-LaRoche, and Merck. It also includes AIDS advocacy groups like the National Association of People with AIDS and the AIDS Action Council. Although it makes perfect sense for these two sets of members to work together, it is a bit of a strange bedfellows coalition. AIDS activists have been bitterly critical of drug companies, believing that they engage in price gouging and are callous to the plight of those lacking the proper insurance.
Still, the coalition works well as the drug companies have shown a sincere commitment to working on behalf of Title II while making some concessions in pricing. At the same time because of deep splits on other related issues, the ADAP Working Group restricts itself to this one single matter.
Using a sophisticated statistical model, the Working Group develops an annual estimate of needs and uses this number in its lobbying of the White House's Office of Management and Budget and the appropriation committees of the Congress. Each organizational member of the Working Group commits itself to lobbying each year. ADAP supporters emphasize that "there is a population that needs access to AIDS drug treatments [and] these treatments are effective." Moreover, not treating those with AIDS with the available drugs will result in more medical costs later in the course of the illness.
During the 106th Congress the ADAP Working Group was successful in its efforts. Congress eventually came through with most of what the coalition was pushing for.