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ADAP Coverage Struggling in Many States, Leaving Many HIVers in the Lurch

By Myles Helfand

October 1, 2009

HIV vaccine in Thailand = sexy. HIV treatment access in U.S. = yawn.

That's the lesson we can apparently take away from the news of the past two weeks. On the one hand, you have The Big News of the Year: Heralds throughout the U.S. trumpeted the story about an almost-sort-of-successful HIV vaccine, despite the fact that even if it does pave the way toward a fully effective anti-AIDS shot, that may not happen for at least another decade.

Meanwhile, largely ignored has been the rapidly deteriorating situation regarding HIV treatment access in the world's richest country, where we seem not to be able to afford to give HIV meds to some of our neediest HIV-positive citizens.

This winter may be a bleak one for many U.S. AIDS Drug Assistance Programs (ADAPs) and the people they serve. Meant to be a safety net for low-income HIVers with limited or no health insurance, several ADAPs throughout the country are struggling to provide HIV meds to those who need them.

In Utah, for instance, the state ADAP announced on Sept. 24 that it would no longer accept new applications for help, according to the Deseret News.

Not only that, but 99 people who had been receiving life-saving meds through the program are being cut off and placed on a waiting list, putting their health at risk, the Salt Lake Tribune reports.

And Utah is not remotely alone. The ADAP in Arkansas is poised to tell 49 HIVers that they're up a creek, and according to the latest "ADAP Watch" report, six other states have also instituted waiting lists for assistance: Iowa, Kentucky, Montana, Nebraska, South Dakota and Wyoming.

To be fair, most of the people involved in ADAPs are likely not heartless bureaucrats, and many are no doubt scrambling to find other ways to hook up low-income HIVers with the meds they need. (We'll cover this story in more detail soon; stay tuned.) Also, in terms of pure numbers, things aren't yet quite as bad as they were back in mid-2007, when more than 500 people nationwide were on an ADAP waiting list. Nor are they yet as bad as they were in South Carolina in 2006 or West Virginia in 2003; in each of those cases, three people died while on an ADAP Waiting List.

That being said, the situation developing in Arkansas, Utah and many other U.S. states can easily become even more scary than it's gotten in the past. For one thing, it's already happening on a grander scale, with a wider range of state ADAPs struggling to stay afloat. For another, there isn't yet a clear way out. Congress is still haggling over a health care overhaul, and perhaps as a result, the reauthorization of the Ryan White CARE Act (originally set to expire on Sept. 30) was postponed for a month. The Ryan White CARE Act is an enormous program that funds not only ADAPs, but many other critical HIV/AIDS-related services throughout the country. The longer it goes without being reauthorized and without funding levels getting a boost, the more tenuous the health of the country's ADAPs may become.

"I think we will be OK through March 31, when the Ryan White fiscal year ends," said Holly Hanson, Ryan White Part B program manager for the Iowa Department of Public Health, in an interview with the Iowa Independent. (Iowa already had seven people on an ADAP waiting list as of Aug. 19.) "But I'm really worried that if we receive flat-funding from the feds and the state ... I don't know that we could get through our next Ryan White grant cycle with even just the people we currently have enrolled. I guess ... we either need to come up with a new national health care plan or increase funding."

Are you impacted by the squeeze on U.S. ADAPs? Are you a case manager? What tips do you have for people who may quickly need to find another way to get access to their HIV meds?

Is this situation just the latest ugly example of how troubled our economy remains, or is it the depressing but inevitable result of a long-standing lack of political priority paid to people living with HIV within the U.S.? And what is our ultimate road out of this mess? Please share your thoughts.

Copyright © 2009 Body Health Resources Corporation. All rights reserved.

See Also
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More News on ADAP Funding and Activism

Reader Comments:

Comment by: Gerry Scoppettuolo (Boston, Ma) Thu., Oct. 15, 2009 at 8:26 am UTC
I organized ACT-UP in Nashville, TN 1n 1988 but I think our goals were insufficient, SILENCE=DEATH but even more so CAPITALISM=death. Drug companies net enough after-tax. after R&D profits on one hour to fund all ADAP shortfalls, But let's not have that discussion, no, no. that would be socialism. And let's leave completely undisturbed pharnmaceutical profits, exploitation.
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Comment by: Mark Edwards (Los Angeles) Thu., Oct. 8, 2009 at 6:10 pm UTC
We have found the money to fund two wars, one for eight years and the other for six years. Why can't we find the money to keep our people alive that are suffering from a virus?
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Comment by: Praying for a Miracle (Salt Lake City, UT) Sat., Oct. 3, 2009 at 12:54 am UTC
As I come off COBRA and find myself underinsured, I was really counting on ADAP to be there. I never imagined I would be in this situation. I had a great job and incredible insurance... I felt like I could be both healthy and independent. Now I'm scared I'll be neither. My family is prepared to give up everything for me and for what? For how long? I want to live but not if it means cannibalizing the lives of others to do it.

I've been working with my case manager but she's dealing with cases far worse than mine... exploring all the options. THERE ISN'T ENOUGH TO GO AROUND! Government services and programs are stretched to the breaking point at a time when we need them the most. I contemplate things like survival while my state lawmakers contemplate ways to keep their $54/day meal allowance.
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Comment by: Brandon Macsata (Washington, DC) Fri., Oct. 2, 2009 at 5:15 pm UTC
Myles - THANK YOU for writing such an excellent piece. We at the ADAP Advocacy Association (aaa+) have been distributing it widely to help with our awareness efforts. We recently launched our "End The Wait" campaign to generate public outcry over these dreaded waiting lists returning, especially in light of the money we're sending overseas to help with the international fight against HIV/AIDS.
Brandon Macsata
Executive Director
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Comment by: Myles Helfand Thu., Oct. 1, 2009 at 6:30 pm UTC
Neal -- Your clarification is much appreciated! Our fact-checkers caught this error, but the change wasn't implemented before this piece went live. We've now removed Indiana from the list of states that currently have waiting lists. Many thanks.

It's also welcome news that Indiana's ADAP has managed to find ways to keep its head above water in this turbulent climate. And that you've demonstrated with your words, as one of the folks who are deeply involved in providing public care to HIVers in Indiana, that most of the people involved in running these ADAPs are indeed doing all they can to maintain (or even expand) coverage when it's even remotely possible to do so.
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Comment by: Neal Carnes (Indianapolis, IN) Thu., Oct. 1, 2009 at 1:59 pm UTC
Thank you for this insightful and poignant article Mr. Helfand. I would like to clarify one point. Indiana's ADAP did maintain a waitlist beginning near the end of 2008, and that waitlist did grow to an astounding 70 people, yet Indiana ADAP was able to eliminate our waitlist by the early part of 2009. In fact, with our expansion into the partial pay rebate arena Indiana not only eliminated the waitlist, we also increased our enrollment cap (the number of people we are able to serve) to the program's highest number ever. Currently Indiana has a few available slots for needy, low-income clients yet the gist of your column is right on: if something major does not happen with national healthcare reform or more monies do not come our way Indiana will have to confront the realities of a new waitlist.
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