AIDS Drug Assistance Programs: A Promising Start, A Shaky Future
Finding out you are HIV-positive is a life altering experience, as anyone who has been through it can tell you. That future you thought was waiting down the road suddenly disappears. Priorities take a big tumble, fear and confusion reign. Living in the only industrialized country without universal healthcare, HIV-positive Americans must face an additional issue that few thought critical in the prime of their lives: access to healthcare. For people with no health insurance and who are unable to meet the stringent Medicaid eligibility restrictions, the AIDS Drug Assistance Programs, or ADAPs, offer a path to life-saving treatment few can afford on their own. ADAP clients are usually the first to testify to the significance of this program. It brings a glimmer of the future they once thought lost.
ADAP first came into being in 1987, when AZT was approved by the FDA to treat HIV. At a cost of $10,000 per year, advocates petitioned Congress to help pay for the expensive drug. In 1990, the program was included in the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, becoming the centerpiece of the nation's HIV care infrastructure. It remains one of the more successful responses to the HIV epidemic by the federal government.
Over the years, ADAP slowly expanded to cover treatment and preventive medicine for opportunistic infections and other conditions. With the approval of protease inhibitors in 1996 and highly active antiretroviral therapy (HAART), the demand on ADAP nearly doubled in one year as people presented themselves for testing and sought treatment. As the number of AIDS deaths plummeted, people stayed in the program and the demand grew. Coupled with the steady increase in new infections, ADAP has seen roughly 600 new enrollees per month nationwide in recent years. Today, nearly one in five of the HIV-positive Americans in treatment, close to 150,000 people, are enrolled in ADAP.
ADAP has matured alongside the evolving HIV epidemic with remarkable resilience and simplicity. Funded primarily with federal dollars which are allocated based on the number of people living with an AIDS diagnosis, each state-administered program must use the limited funds to best meet the needs of the growing uninsured. As the payer of last resort, ADAP's ability to fulfill its role is contingent on the size of the healthcare gap it is facing. Not surprisingly, states with a more generous Medicaid program and better healthcare system do better. The local economy also plays a role, determined by the number of jobs that include health benefits. Political priorities also come into play, demonstrated by each individual state's willingness to allocate state funds to the program.
Due to all of these reasons, each ADAP's eligibility criteria and the number of drugs they cover vary greatly from state to state. Annual income eligibility caps range between $12,000 and $50,000, differences in formularies range between unlimited drug coverage to antiretrovirals only, with one state not even providing protease inhibitors. While there are ongoing debates on how to resolve these disparities in access to HIV care, it is important to note that ADAP is still an emergency healthcare program, even as we cross into the third decade of the epidemic. The program's shortcomings are but a reflection of the state of healthcare in this country. However adaptive the program has been in meeting the needs of the HIV-positive and uninsured, it is a far cry from a comprehensive and responsible public health measure.
Unlike the federal Medicaid entitlement program where funding follows program growth, ADAP funding must be allocated by the federal government each year. The program is only able to expand coverage to fill the healthcare gap and meet growing demand when adequate funds are made available, notably in the late '90s. But as the federal commitment to domestic HIV care flagged with the current administration, programs across the country suffered. Federal ADAP funding has fallen short of the projected need in the last four years, with the current fiscal year operating with a $122 million shortfall, about 15% of the program budget.
In this climate of under funding, for the first time ADAPs are having a hard time meeting their core function: providing antiretrovirals. Nearly two years after its approval, the entry inhibitor Fuzeon is still not available in some states, due primarily to its exorbitant cost. Clients co-infected with hepatitis C are also having similar problems accessing pegylated interferon. Several states have eliminated critical prophylaxis and treatment agents for opportunistic infections and drugs that manage treatment side effects. Other cost cutting measures such as prior authorization and the strict enforcement of medical criteria are popping up in many states, creating barriers to care that disproportionately affect those people who are worse off.
The most visible symptoms of the ADAP crisis are the waiting lists. As of September, ten states had closed their programs to new applicants, relegating more than 1,600 people to wait for medications just five months into the current fiscal year. By the end of 2004, half of the programs in the country will likely close enrollment and/or implement more program restrictions.
While President Bush promised $20 million dollars in June to remedy the waitlist crisis, three long months later the administration has yet to come up with a way to translate this funding into access to treatment. For fiscal year 2005, the President has proposed only $35 million of the projected $217 million increase needed to adequately fund ADAP. As of this writing, the prospect for ADAP is tenuous.
One group that is working to end this crisis is the Save ADAP Committee of the AIDS Treatment Activists Coalition. The committee functions via an email list serve and monthly conference calls, generating action alerts to advocate for ADAP funding and press releases to call attention to the crisis. Save ADAP members are composed of ADAP clients, frontline caseworkers, policy advocates, and even ADAP administrators. The group has organized two constituent visits to Capital Hill this year, bringing people from across the country to tell their legislators about the importance of ADAP. The stories they tell are about coming back from the brink of death thanks to a program that was there when they needed it. They are about picking up the pieces and moving on again once they regained their health and hope and got another chance. They are about making sure that someone else in their shoes will have the same opportunity when they need it.
ADAP was born out of a public health emergency. Seventeen years after its founding, the emergency is no less urgent. The program's existence and well-being depends on the AIDS community's commitment to hold our government accountable for the healthcare for those in need. The struggle continues.
To join Save ADAP and find out more about the group, please visit www.atac-usa.org/adap. For more information about ADAP, please visit the ADAP Monitoring Project: www.atdn.org/access/adap/index.html.
Lei Chou is the Director of The Access Project at the AIDS Treatment Data Network and a member of Save ADAP.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.