The AIDS Drug Assistance Program (ADAP) is a joint federal/state program, administered by the states, which provides access to life-saving medications for people living with HIV or AIDS. It is an absolutely vital resource for more than 170,000 uninsured or underinsured people nationwide – roughly a third of all people in the U.S. who are getting treatment for HIV. It is a “lifeline” in the most literal sense.
But now, that lifeline is frayed. The current, devastating economic recession has cost many people with HIV their jobs – and, with their jobs, their health insurance. So more people than ever before are applying to ADAP for help.
At the same time, both federal and state governments have lost tax revenue, leading to a tightening of budgets. Federal funding increases in recent years have not been enough to keep up with the increase in demand for ADAP, and state contributions have been cut as the states wrestle with their own budget shortfalls.
So, ADAPs in a large number of states have been slashed in one way or another.One way states do that is to cap the number of enrollees they will accept, and institute waiting lists for the rest. There have been waiting lists in the past, but they have only lasted a short time, and the number of people on them has always been relatively small. Today, in one state alone – Florida – there are 3,008 people on the waiting list. There are a total of 5,679 desperate people waiting for access to their lifesaving medications in 10 states. (Please see the sidebar with this article for the complete list.)
A total of 19 states have taken draconian measures of one kind or another to curb costs, including reducing their formularies or lowering their financial eligibility. Arkansas lowered their financial eligibility to 200% of the federal poverty level in 2009, kicking 99 people off their ADAP rolls. Ohio lowered their eligibility to 300% of the federal poverty level in July, 2010, barring 257 people from access to their HIV medications. Utah lowered their financial eligibility to 250% of the federal poverty level in 2010, kicking 89 of their clients to the curb.
Where can I turn if ADAP won’t take me?
Most people who have been cut loose or put on waiting lists by ADAP have been able to get the drugs they need directly from the pharmaceutical companies’ Patient Assistance Programs (PAPs). This is not an ideal solution, because applying for medications through a PAP can be complicated, and PAPs have their own set of eligibility requirements to contend with. However, a big “thank you” is due to the pharmaceutical companies for providing this option of last resort. If you need to apply for assistance from your drug maker’s PAP, you would be wise to contact your local AIDS Service Organization to get help from a knowledgeable case manager.
If my state has a waiting list, should I apply for ADAP anyway?
Yes, absolutely – for a number of reasons. First, it will document your need. Second, it will put you in line for help when additional funding (hopefully!) is found. Third, it will help activists in their efforts to convince lawmakers of the growing necessity of additional funding. If you don’t apply, you’re not even a statistic.
Where do we go from here?
Economists claim that the current recession is – technically speaking – over. Of course, everyone hopes that the economy will pick up steam and begin to add jobs, which will in turn add to government revenue. But even the most optimistic observers say that it will take years to replace the millions of jobs lost in this recession.
In the meantime – speak out! ADAP funding is not just an economic issue, it is a political one. ADAP funds are voted on by your elected representatives, both in Washington D.C. and your state capitol. ADAP came into being as a result of intense political pressure on elected officials from fired-up HIV activists in the late 1980s and 1990s who would not take “no” for an answer. Unfortunately, as HIV changed from a death sentence to a chronic, manageable disease, the fervor of HIV activism died down. HIV is in danger of being “swept under the rug” of public consciousness. But apathy, in this case, can be fatal. HIV was once a killer because there were no effective drugs to treat it. It is in real danger of becoming a killer again – in spite of the existence of effective treatments – if people cannot afford them.
The History of the AIDS Drug Assistance Program
The first drug proven to be effective against HIV, called “AZT,” was approved by the Food and Drug Administration in 1987. It was expensive – too expensive for the average person to afford. So HIV advocates pressed Congress to pass the AZT Assistance Program. This 1987 program allocated $30 million to state health departments, to provide AZT to those who could not afford it.
In 1990, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. This act renamed the AZT Assistance Program the AIDS Drug Assistance Program (ADAP), and it became part of Title II of the CARE Act.
The first major ADAP crisis came in 1996, when the program was overwhelmed by unexpected demand as a result of the introduction of highly active antiretroviral therapy (HAART), which called for the treatment of HIV with a combination of three or more drugs. Again, as the result of strong advocacy by a highly-motivated HIV community, there was a large increase in federal funds to cover the new demands on the program. State programs were able to expand their enrollments and their formularies (the list of drugs they can provide to their clients).
In the early 2000s, ADAP programs once again began to feel the pinch, and this time it was the states that took up the slack. State budget contributions to ADAP almost doubled from $171 million in 2003 to $328 million in 2008. The pharmaceutical industry also did their part by negotiating deep discounts in drug prices for drugs they provide to state ADAP programs.
But now ADAP is once again in crisis – and this time there is no obvious solution in sight.
The lesson of history? ADAP would not exist without the advocacy efforts of the HIV community. To survive the current crisis and continue on solid footing, it will take a renewal of advocacy efforts to the levels that existed in 1996.
Copyright 2018, Positive Health Publications, Inc.
This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!