January 31, 2011
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.
The 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.
Activism means getting the word out. I hope you'll help increase calls to our elected officials by sharing this posting. ;]
Visit Mark's live blog at www.MyFabulousDisease.com.