Mark S. King

Behind the scenes at the Emergency ADAP Summit

Filed By Mark S. King | February 02, 2011 8:30 AM | comments

Filed in: Living, Politics
Tags: ADAP, HIV/AIDS, My Fabulous Disease

Step behind the curtains of the 2011 Emergency ADAP Summit last weekend for a revealing look at activists trying to address the growing AIDS Drug Assistance Program (ADAP) crisis. In this video episode of My Fabulous Disease, you'll learn about the panic over ADAP, and exactly what you can do to prevent thousands of AIDS patients from losing access to life saving medications.

The video is also a candid glimpse into tensions among the advocates themselves (mostly over the role of Big Pharma) and emotional moments of personal frustration and fatigue from years of AIDS advocacy.

The weekend was organized by the ADAP Advocacy Association (AAA+) and held in Ft Lauderdale (Florida has, by far, the longest waiting list of patients now waiting to join the ADAP program). The lead sponsor of the event was the AIDS Healthcare Foundation.

The 2011 Emergency ADAP Summit featured presentations from the National Alliance of State & Territorial AIDS Directors (NASTAD) and an impressive assortment of advocacy groups such as Housing Works, A Brave New Day, Broward House, and the Florida HIV/AIDS Advocacy Coalition. Even pharmaceutical representatives were there to explain their drug assistance programs for patients, adding a layer of "civility vs. activism" tension that kept everyone on their toes.

If you'd like to know if there is a waiting list in your state, you can find this information on the AAA+ web site, and the Fair Pricing Coalition provides information on the various pharma drug assistance programs.

Blogging Gang.jpgThe pleasure of devoting my weekend to this issue was doing it alongside some amazing people, particularly friends from the blogosphere I was meeting in person for the first time. Here's a happy group of us taking a break from the proceedings, including (clockwise from top left) myself, POZIAM blogger Christopher Myron, Dab Garner (Dab the AIDS Bear Project), Sherri Lewis ("Straight Girl in a Queer World"), and POZIAM founder and blogger for The Body, Robert Breining.

But let's return to the theme of the video episode: doing what you can to help end this funding crisis, meaning, pick up the phone and call your elected officials (VoteSmart.org will tell you who they are and how to reach them). And to make it as easy as possible, the video give you a lesson on what to expect from the call and what to say. I can still find calls like this intimidating, but these instructions make it simple for you.

Activism means getting the word out. I hope you'll help increase calls to our elected officials by sharing this posting.


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While the waiting lists issue remains the same, another one has apparently been resolved -- the fact that FLA was running out of money for the program altogether in a few days. A stopgap program called Welvista has reportedly resolved this until the fiscal year begins again in April.

The wait list situation also does not include people who have been dumped from the program in various states because the criteria for participating was made more strict (you have to be even poorer to join).

peter abbott | February 3, 2011 3:56 AM

Thank you Mark for each and every episode.
I moved from FL to CA 7 years ago and it has taken that long to get used to the massive active advocacy movement community here, I live in SF. I wonder if anyone at this advocacy Kindergarten in Ft Lauderdale asked: why? do other states with more people on ADAP have no waiting. And drug-formulary lists that are pages long, fabulous. I still love FL and go back every year to visit.
Joey Wynn is as handsome as ever, and still going strong, he's a saint. I burned out and left, traded beach for brains, found a new paradise here.
Peter Abbott

So the answer seems to be.... single-payer! And have the government negotiate fair prices for drugs.

Great post, Mark. I didn't know about ADAP so I'm glad you shared it. I checked to see if ADAP is on the "hit list" created by the Republican Study Committee (the list is at http://www.weeklystandard.com/blogs/100-programs-republican-study-committee-wants-abolish-or-cut_536787.html). Didn't see ADAP on the list but it could be within a larger targeted program.

In any event, this is just the type of program that's likely to be a budget target this year - both at the state and federal levels - so I'm glad activists are talking about it.