Patient Assistance Programs: What Patients Need to Know

The AIDS Drug Assistance Programs (ADAPs) are in a state of emergency. According to the National Alliance for State and Territorial AIDS Directors (NASTAD), wait lists have tripled by state and increased by over 1,000% by count since the beginning of 2009. Furthermore, state budget cuts in AIDS programs to the tune of $167 million has truly shaken ADAPs nationwide – but especially in the ten (10) states that were forced to institute waiting lists. In 2000, Congress appropriated seventy-two percent (72%) of the federal ADAP earmark; a number which fell to fifty-four percent (54%) in 2009, and below fifty (50%) percent in 2010. This severe drop in the federal commitment to ADAP – in addition to state budget crises – has largely been the catalyst for the spike in HIV patients placed on wait lists since the start of the crisis. It is anticipated that additional states will have to implement some form of cost containment measure in the upcoming months, including wait lists. In light of the present predicament, educational programs designed to link stakeholders to available resources – including prescription assistance programs and co-payment assistance programs – are urgently needed. Only through a coordinated effort of public-private resources can the wait list crisis be averted.

The problem of growing ADAP waiting lists is exacerbated because the United States is facing an HIV/AIDS epidemic of devastating proportion. According to some estimates, the number of people living with HIV/AIDS in the United States exceeded two million people by of last year. These numbers are not due to decrease in the near future. In 2006 alone, the Centers for Disease Control & Prevention (CDC) estimated that there have been more than 56,000 new HIV infections per year for the last decade. If this was not severe enough, the disease is far from color blind. Currently, the incidence rate of new HIV infection among African American men and women is seven times that of the Caucasian population. Furthermore, racial disparities are echoed regionally as the epidemic has seen its most recent unfettered growth in Southern states, which often times have smaller state budgets and fewer access points to comprehensive care.

The good news is that with the advent of new medicines, people living with HIV/AIDS are able to live full and productive lives. The bad news is that it is increasingly difficult for people living with HIV/AIDS to afford their medications. Life saving medications can cost a single patient up to $20,000 per year. This is compounded by the fact that nearly three quarters of all people with HIV/AIDS are either uninsured or dependent on public insurance. This makes strengthening the public HIV/AIDS healthcare system of critical importance – but in the meantime efforts should concentrate on eliminating the wait lists.

With ADAP budgets stretched to the limit, other resources are needed to help plug the gap. Enter prescription assistance programs (PAPs) and co-payment assistance programs. Pharmaceutical company PAPs make available free or low-cost medications to eligible patients, while co-pay programs provide financial assistance for certain health care costs to patients who qualify financially and medically.

PAPs are designed to support low income U.S. residents with free or low cost prescriptions. The programs usually cover brand name drugs only and are administered individually by the pharmaceutical companies that manufacture the drugs. PAP programs are administered differently by manufacturer and sometimes by drugs within the same manufacturer. In most cases the programs are designed around income guidelines. Most often income has to be below or just above the poverty guideline set by the federal government. There are some companies that go as high as 2-3 times the poverty guidelines. The majority of the programs require the patients to be U.S. residents, be uninsured, and meet the income requirements. Income verification in the form of W-2, 1099, pay stub, etc. must be provided, as well as any benefit statement received. There are exceptions to these requirements. Some programs, for example, allow insurance but no drug coverage, Medicare D recipients are eligible in some cases. Each program has specific eligibility requirements with some are more stringent than others.

There exists an immediate need in ten states - plus numerous others - to link stakeholders with these two important resources. NASTAD is now reporting 7,299 individuals are currently on ADAP waiting lists, as of October 13, 2011 – including 3,389 people in Florida, 1,763 people in Georgia, 5 people in Idaho, 790 people in Louisiana, 11 people in Montana, 58 people in North Carolina, 0 people in Ohio, 18 people in South Carolina, 51 people in Utah and 1,044 people in Virginia.


In response to this growing crisis, please participate in a training on the state of the epidemic and what can be done to help. The ADAP Advocacy Association (aaa+), in coordination with the Community Access National Network (CANN), HealthHIV, AIDS Alabama, Broward House and the Great Lakes ADA Center – which all work to ensure access to care and treatment for every person with HIV in need – is extending this invitation to all ADAP Stakeholders nationwide to gain a fuller perspective from the pharmaceutical companies about how their prescription assistance and co-payment assistance programs can address the many issues confronting people living with HIV disease on wait lists.

The “Accessing & Understanding HIV/AIDS Patient Assistance Programs” virtual trainings are being held to raise awareness about pharmaceutical patient assistance programs (PAPs), in an effort to alleviate the ongoing ADAP crisis. There will be an introductory training for ADAP stakeholders who have little or no knowledge about PAPs, and an advanced training for ADAP stakeholders who are well versed with PAPs, but seek additional information.

Registration is free!

To learn more, or register, please visit http://www.adapadvocacyassociation.org/events.html.