Across the country, AIDS Drug Assistance Programs (ADAPs) are running out of money, rationing care, or simply turning away people who need assistance. The situation is worsening as the number of people with HIV/AIDS continues to grow but public resources for programs to help them do not.
Nationally, ADAP needs an increase of $217 million to help the additional 24,000 individuals estimated to need anti-HIV therapies and no way to pay for them. The program already provides life-extending medications to some 100,000 individuals annually.
Failure to adequately fund ADAP will only escalate the AIDS crisis in America by forcing thousands of low-income and uninsured people with HIV to forgo therapy until they become severely immune compromised. These individuals will develop higher viral loads than people on therapy, increasing the risk of HIV transmission to their partners. Ultimately, failure to expand ADAP will result in more people becoming HIV infected and more people dying of AIDS-related causes.
Created in 1987 to assist states in paying for AZT -- the only anti-HIV medication available at the time -- ADAPs currently operate in all 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, Guam, Northern Mariana Islands, American Samoa and the Marshall Islands. Congress incorporated ADAP into the Ryan White CARE Act in 1990 to provide access to AIDS-related prescription drugs for low-income individuals who have no other source to obtain them.
ADAP was instrumental in achieving the historic decline in AIDS-related deaths after protease inhibitors became available in 1996. The nearly 70% drop in AIDS-related death in the U.S. in the late 1990s is largely a result of CARE Act services, including ADAP, made available to deliver life-saving medications and essential health and social services to the individuals who most needed them.
Despite its record of success, ADAP is facing an uncertain future. As of April, nearly 1,300 people nationwide were on ADAP waiting lists, fifteen states had closed enrollments or limited access to antiretrovirals, and eight states anticipated program restrictions in the coming months.
Chronic under-funding by the federal government and inadequate state contributions, combined with escalating drug prices, more people needing HIV medications, and needing them for longer, has ignited the crisis.
Despite an unprecedented call to action on AIDS in his 2003 State of the Union address, President George W. Bush sought only a $20 million increase for ADAP in FY04, and no increases for vital medical and social services through the programs of the CARE Act. Senator Charles Schumer (D-NY) offered an amendment in September to boost ADAP funding beyond the president's request, but the effort failed in a vote cast along party lines. Lawmakers finally agreed on an ADAP appropriation of $748 million -- a full $180 million less than is needed to meet current needs -- for the fiscal year ending October 2004.
Concerned that insufficient funding would force additional states to cap enrollments, reduce services, or start waiting lists, a group of 100 ADAP advocates from 30 different states traveled to Washington, DC in February to ask lawmakers to consider a $180 million emergency supplemental appropriation for ADAP. The group included individuals on waiting lists and those representing states with program restrictions. Organizers agreed that, while the effort increased awareness of ADAP on Capitol Hill, passage of a supplemental appropriation is unlikely.
In addition to the battle in Congress, ADAP advocates are also fighting for adequate state funding. While two-thirds of states augment federal ADAP contribution with state funding, not all states do, or do so at sufficient amounts. These variances have created significant differences between the states in terms of eligibility and the number of medications covered.
Advocates from California and Texas waged successful battles against draconian restrictions proposed by their legislatures. This year, Illinois advocates are asking state lawmakers to approve the governor's proposal to increase state ADAP funding by $3.1 million to meeting new needs and add anti-cholesterol and mental health drugs to the formulary.
While grassroots activism is gaining small, state victories, achieving significant victories at the federal level will take our best efforts. In addition to ADAP, adequate funding is needed for other critical programs including Medicaid, HIV prevention programs, AIDS research, the Housing Opportunities for People with AIDS program, global AIDS programs, and the entire Ryan White CARE Act. Strong grassroots pressure can influence the future of ADAP funding, particularly during the election year as all candidates and elected officials must answer to their constituents.
Join a network. Individuals and organizations can play an important role in solving the ADAP crisis. Save ADAP and numerous national and regional AIDS organizations monitor Congress and state legislatures on ADAP and other HIV-related issues. By joining one of these groups, you can keep up-to-date on national, state, and local ADAP advocacy issues. In Illinois, call the AIDS Foundation of Chicago at (312) 922-2322 or go to www.aidschicago.org to join the Statewide Advocacy Network. Project Inform's Treatment Action Network is a national grassroots network for individuals concerned about ADAP and other HIV-related issues (www.projectinform.org). In addition, AIDS service organizations are encouraged to designate a staff person, volunteer, or board member as a representative to Save ADAP. To join Save ADAP or to get more information, go to www.atac-usa.org/adap.html.
Educate your elected officials about ADAP. Find out who represents you in Congress and in your state's legislature and make sure they know that ADAP saves lives and money. Join Save ADAP's "Message in an Empty Pill Bottle" campaign and send empty pill bottles to your U.S. senators and representative, urging them to provide a "refill" of funding for ADAP. (Visit www.atdn.org/save8.html)
Make HIV/AIDS, and the ADAP crisis, an issue in this year's elections. Go to www.AIDSVote.org and endorse its platform calling for treatment access for people living with HIV/AIDS in the U.S. and around the world. Read Senator Kerry's platform on HIV/AIDS issues, and send an email to President Bush to ask his campaign to share its plan to combat the epidemic. Finally, ask local candidates how they will solve the ADAP crisis. Check out the Web site's "rally in a can" and use the materials to draw attention to HIV/AIDS during the next campaign event in your town.
David Munar and Sara Schmitt monitor federal AIDS issues for the AIDS Foundation of Chicago, visit www.aidschicago.org.