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January 31st, 2011

AIDS Activism 101: Steps to end the ADAP crisis.

Activists held an “emergency summit” this weekend to address the growing AIDS Drug Assistance Program (ADAP) crisis, and I’m taking you there. 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 revealing glimpse into real-time activism, including 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 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 GangThe 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.

Thanks for watching and, as always, please be well.
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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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17 Responses to “AIDS Activism 101: Steps to end the ADAP crisis.”

  1. Brandon Macsata Says:

    January 31st, 2011 at 2:01 pm

    Mark – Thank you for taking the time to learn about the AIDS Drug Assistance Programs (ADAP) and the crisis facing thousands of people living with HIV/AIDS across the nation. Your blog is excellent and captured the dynamics behind the event, as well as the constructive dialogue — even when everyone didn’t agree.

  2. Joey Wynn Says:

    January 31st, 2011 at 2:47 pm

    Thanks for such a dynamic capsule of what transpired.
    You do great work! With speed & humor!

  3. Nick in Iowa Says:

    January 31st, 2011 at 6:19 pm

    Mark, great piece as always. We recently eliminated our wait list here in Iowa but who knows how long ADAP will be open for enrollment. Thanks for keeping us motivated and entertained.

  4. steve lindenberg Says:

    January 31st, 2011 at 7:42 pm

    I’m only here because of AHF. It’s at times like these that makes me proud to be gay. The coalition that was brought together for this urgent issue only illustrates how the community comes together for solutions to a common purpose.

  5. Anthony Says:

    January 31st, 2011 at 8:54 pm

    First and foremost, thank you for your excellent coverage of this event; I was sad not to have been able to make it myself. But I do have a couple comments.

    1. the comments made by Mr. Michael Weinstein are extremely misleading. While SOME medication being sent to developing countries is cheap in our eyes, the case is not so for the people needing it in these countries. Furthermore, what Mr. Weinstein fails to inform you is that these medications are typically medications that we NO LONGER USE here in the US because we have new, more effective medications with less harsh side effects that are being sent to the developing world. I truly feel we cannot compare what we pay to what developing countries are paying.

    2. In response to Mr. Brandon Macsata: The pharmaceutical companies are to blame, maybe not entirely, but the ARE part of the problem. If they put PEOPLE LIVES, over their profits then we would not have this problem to begin with. We all know that most people infected with HIV/AIDS worldwide does not have the $5,000 (average yearly cost per person per year; statistic taken from the World Health Organization) to pay for medication. Therefore, if companies lowered their prices AND joined the Medicine Patent Pool Foundation, not only would it help the waiting lists here in the US; but could save the lives of MILLIONS of people world wide. And I believe the rep that stormed out of the room shows us the true nature of the companies.

  6. Rich in Boston Says:

    January 31st, 2011 at 9:40 pm

    As always thank you Mark for blogging important issues with great seriousness as well as your wonderful sense of humor. The lack of funding in this country is a disgrace, especially in Florida. It’s a second home to me and I’m so sad to see the ‘sunshine state’ so much in the darkness on the top of the list.

    Rich

  7. Susan Forrest Says:

    January 31st, 2011 at 10:03 pm

    We cross-posted this on the HIV Drug & Alcohol Task Force website. Thank you.

  8. Ben Says:

    January 31st, 2011 at 10:16 pm

    Mr. Weinstein’s analysis is ridiculous. Years of effort, by folks ranging from well-meaning activists to Bill Clinton, have prevailed upon the pharma industry to provide low cost drugs to less-developed countries. Mr. Weinstein somehow concludes from this that this artificially low cost must still have profit and therefore feigns outrage that they not cut the price of medicines to first world markets with private or national health insurance. Idiotic comments like his undermine progress, since, if he is right, and companies are profit-driven and cynical, why on earth would they give anything away, or subsidize low prices to NGO’s and governments, if all they get is ignorant, inflammatory criticism for their “investment.”

  9. steve daldine Says:

    February 1st, 2011 at 12:47 am

    hello mark. I want to thank u for giving me hope. I lost my lover of 27yrs in july09. I’m a 26yr survivor, and the only one left in my circle of friends of long term survivors. u give me hope, seeing someone else out there who is long time survivor. i just was told my cd4 is 160 and it freaked me out. seeing u gives me hope. keep up the good job. thanks, steve daldine

    Steve, comments like yours are the reason I do this. Keep that hope strong! — Mark

  10. Sue Says:

    February 1st, 2011 at 11:19 am

    My rep says he’s on board.

  11. Tomasa Says:

    February 1st, 2011 at 1:25 pm

    It really is hard to find knowledgeable people for this matter, however you sound like you are aware of what you are sharing! Appreciate it.

    I knew very little about ADAP when I went to this summit. I just knew I SHOULD know. Education just takes the desire to find out. Thanks for educating yourself by watching this! — Mark

  12. Mike Emm Says:

    February 1st, 2011 at 1:48 pm

    Mark, thank you for giving me a bit of education about HIV/AIDS. Though a reasonably up to date gay man and a supporter of a funding program here in Florida. I am not an HIV carrier but I have a community that has been horribly impacted by the failure to educate, test and treat this universal disease.

    One thing you taught me in the treatment of HIV/AID is the significant reduction of the risk of transmission with maintaining treatment. While we might not be able to influence sexual behavior no matter how we try we can reasonably get compliance with medication regimes if the drugs are available with medical professional follow-up. When I went into the pharmacy I use here in FL and I saw the sign that there was a 100% reduction in the minimum qualifying salary for assistance I had a palpable reaction. The staff told me it carried a significant impact to a number of people they serve.

    So thank you for giving me a little bit more information and a better understanding. I promise today I will use it to contact my congressional representative and Senators about this and the positive impact funding can have to working towards an end to this horrible disease without a miracle drug just a reasonable effort.

    Mike

  13. Gary S Says:

    February 1st, 2011 at 4:10 pm

    I love this information. Very helpful in making the correct and necessary connections. And although I live in a state which has no ADAP waiting list, the blog posting is very inspirational

  14. Gary S Says:

    February 1st, 2011 at 4:48 pm

    Another thought. Re: Mr Weinstein’s comments. Is it possible that a drug regimine costs much more than $64 for an annual provision(in a developing country) but much less than $12,000 in the USA? I would venture to guess that it does and that some people subsidize other’s regimines (just like how our own government subsidizes our personal regimines). I would guess regimine production costs are somewhere in between $64 and $12,000 per annum. As another reader previously seemed to write: we cannot make a direct comparison of what we pay and what developing countries pay for nurmerous reasons . And yes, pharmaceutical companies should make a profit, as they have employees to pay(employees that pay taxes, have lives to lead and may have medications of their own to purchase) and R & D that’s expansion is imperative. The question is: how MUCH profit is equitable, reasonable and acceptable?

  15. Lonny LeFever Says:

    February 1st, 2011 at 6:53 pm

    Gary, I agree with most of what you say and being in business I understand making profit and the people that employ. But your very last question is hitting it head on.

  16. Edwin Says:

    February 7th, 2011 at 11:05 pm

    Hello Mark,
    I was told about this site and the video clip you have provided us and I want to say thank you for educating me and my friend. I will make it a point to speak with my representative.
    -Edwin

  17. Anne Says:

    June 14th, 2011 at 9:21 pm

    You are to be commended for getting the word out about what is being done…and not being done. ADAP needs this kind of informed publicity to further their work.
    Thanks to you for being a tireless advocate, you are appreciated!

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