The AIDS Drug Assistance Program ( ADAP ) was serving about 134,000 persons—roughly a quarter of all of those with HIV who were in care—in June 2005, according to the latest annual report from the Kaiser Family Foundation and National Alliance of State and Territorial AIDS Directors ( NASTAD ) .
The report was released on March 30 at a forum in Washington, D.C., that was packed with AIDS advocates and policy wonks. They heard how Hurricane Katrina had strained and revealed flaws in the system, and heard insights as to why it is taking so long to reauthorize the overall Ryan White program, which funds the largest portion of AIDS services in the U.S.
'Drug spending has increased at a faster rate than client growth, which reflects increasing costs in drugs and increasingly complex therapy,' said NASTAD's Murray Penner.
'Waiting lists are not the only challenge that ADAPs face, but they are the most visible,' said Kaiser's Jennifer Kates. In February, nine states had about 800 people who were eligible to receive help under their state ADAP guidelines but were on waiting lists. She asked, 'Are they a permanent feature of ADAPs at this point, in terms of the way they are structured?'
'Each state has a very different mix of revenue sources and how they fluctuate over time.' She said, last year 12 states had a decrease in overall spending on ADAP. That plays out in terms of different eligibility requirements and different drug formularies as the states try different trade-offs of covering more people with fewer drug options or more drugs to fewer people.
ADAP served as a lifeline to people living with AIDS who fled the Gulf Coast region devastated by Hurricane Katrina. But the experience also revealed flaws in a system that is not very portable among states that have varying eligibility requirements and drug formularies.
Louisiana ADAP director Beth Scalco said their program served about 1,700 clients prior to Katrina. Those people who evacuated thought they would be gone for only a few days, while those who stayed and were flooded out had little time as the water rose quickly when the levees broke. Few had their drugs, let alone their paperwork with them in order to continue therapy. The ADAP office was flooded out and there were no backup records elsewhere in the state.
Dwayne Haught runs ADAP in Texas, which received the bulk of those who evacuated. Funding for the program 'is like a dog chasing its tail' and there was no capacity to absorb the new clients. He called the eight major drug manufacturers and within 48 hours most agreed to provide in-kind donations to allow them to run the program for the next two months. 'It let us respond to the emergency immediately.'
Texas simplified the application form for evacuees from 12 pages to 1; tracked clients by their original Louisiana address; and created a backup duplicate of all information on all clients and stored that in a distant part of the state.
REAUTHORIZATION MATRIX
Authority for the overall Ryan White program that includes ADAP expired six months ago. 'We are grappling with differences of access to services across all titles to make it equitable for all Americans,' said Shana Christrup, who is leading the effort for Sen. Michael Enzi, R-Wyo., chairman of the Health, Education, Labor & Pensions Committee.
'How you do that may be different than what you did before' in the face of an epidemic that is changing both geographically and in the populations it affects. That means maintaining existing infrastructure even while creating new capacity where it is needed. 'We are still in the throes of figuring that out.'
Connie Garner, policy director for disabilities and special needs populations for Sen. Ted Kennedy, D-Mass., said a key issue is the relationship between ADAP, Medicaid and Medicare Part D, the new drug benefits program that is going through a confusing introduction.
In the face of the changing epidemic, ' [ t ] here is a concern about taking infrastructure away before you are convinced that you have something to replace it with?...Do we need to create new structures, or [ because of ] fifteen years of change, do we need to reconfigure what we already have.'
'I'm very concerned with two principles and that's it: one is power—who's in charge; the other is who is going to lose money and gain money. If the right kinds of policy questions are not asked, are not analyzed, the data is not run, you are going to wind up with a mess if you haven't thought about it in the correct way.' She is concerned with 'a domino effect to the rest of the health care system.'
Garner said that Medicaid looms large in the debate. Should states that have put resources into creating an expansive program that provides coverage to HIV then lose Ryan White money to states that do not make as much of an effort to support either program?
She said the Ryan White program was created as 'a response to a public health emergency' but now with people living 20-30 years or more with HIV, issues of nutrition, support services and quality of life become more significant. 'It is not just drugs.'
