Tuesday, July 12, 2011

The 4th Annual ADAP Summit; a budding advocate.

Last week I attended the 4th Annual ADAP Summit in Washington, DC. An event put on by Brandon Macasta CEO of the ADAP Advocacy Association (aaa+).  The association’s mission and purpose is to promote and enhance the AIDS drug Assistance Programs (ADAP’s) and improve access to care for persons living with HIV/AIDS.  They work with advocates, communities, health care, government, patients, pharmaceutical companies and other stakeholders.
This year’s message was “When will Washington come to the rescue”.  Right now, as of July 1st 2011, 8,655 people across 13 states are on wait-lists to receive lifesaving HIV medications.  When I began following this crisis the number was half what it is now, and each week the number keeps creeping up. Shockingly this number represents over 90 percent of individuals living in the South. In June 2009 Ninety Nine people were on a wait-list!
Particularly troubling is the state of Ohio’s ADAP program where budget shortfalls have put that states ADAP budget in a 12 million dollar shortfall; they have dis-enrolled individuals, and are considering dropping the FPL to 100 %, which equates to nearly an $8,000 a year maximum income to qualify.  Ohioan’s who may have previously qualified for the ADAP program, have essentially become “forgotten” by their state.
The conference was my first advocacy event, my first time in Washington, DC.  It was amazing to be surrounded by such advocates as Dab Garner with dabtheaidsbearproject, Butch McKay with Positive Living, Mark S. King with myfabulousdisease, and Jason King from AHF.  It was also great to finally meet Robert Briening founder of poziam (a social support site for PLWHA), and dozens of “poziamers”, and numerous others to long of a list to mention.
It was very empowering being at this conference and being around these incredible advocates, whom many have been advocating as long as I am old.  We must not forget the history of HIV/AIDS and how in the 80’s our government did nothing to recognize the problem. It wasn’t until individuals, while watching dozens upon dozens of friends and loved ones die, and they themselves on the brink of death that a movement began to recognize AIDS and to demand treatment and services for those infected. I was fortunate to meet the Founder and CEO, David Purdy of the World AIDS Institute. His organization is committed to documenting and preserving the Global History of AIDS.
It is advocacy from early on in this epidemic that so many of us are alive today and LIVING with HIV.  If I had awards to hand out; I’d give them to all of you who fought for the treatment and services PLWHA have today.  Your commitment and dedication to the cause is honorable, and I know I am alive today because of your collective efforts!
Though as we enter the 30th year of the epidemic we are faced with a new challenge, and that is access to care.  We are not a 3rd world country and those who are sick and in need of medicine and care should have a right to access that care. Why do I have access to care and medicine, while my fellow American’s LWHA in other parts of the country must go without?  Every person in this country should have equal access to care no matter where they live!

At the 1st Adap Advocacy Association's awards dinner I was fortunate to sit at the table of Ramsell Holding Corporation, and meet the Executive Director of the Flowers Heritage Foundation.  Both share similiar goals, serving the community and improving the lives of the most fragile. Two caring organizations working hand in hand playing a vital role in access to care for PLWHA.

Another aspect of the conference included visiting our congressional leaders in the Senate and House of Representatives to address this concern.  I had the opportunity to sit in on a congressional briefing where staffers from various offices sat in to listen about this crisis, and to hopefully bring back to their bosses critical information.  I then got to sit in the office of the Speaker of the House and Ohio representative John Boehner.  A group of 10 of us met with a high level staffer who works on health issues. While the focus was mainly on Ohio, opportunities arose to talk about the overall crisis. Though the meeting was short and I didn’t get a chance to say anything I did follow up with an e mail thanking the staffer for his time and expressing my concerns about the crisis.
On day 1 the opening speaker of the conference gave a powerful message to rile up the crowd and evoke in us a since of duty and responsibility.  I was shocked that out of the 200 people or so throughout the 3 day conference, only a handful of folks from my generation were represented. So I ask, WHERE IS MY GENERATION AT?  I will not take for granted a single day I am alive on this earth; the sacrifices so many made before us. I have felt an innate since of duty and responsibility since my diagnosis. That duty being to bring further awareness of HIV/AIDS and Hepatitis C, helping to break down the stigma, and standing up for what is right.
Am I an advocate? I would say I am a budding one. The bud opened up a bit further this past week!  Just sitting in on a meeting with a high level staffer IN Speaker of the House John Boehner (3rd in line to the presidency), smelly smoke filled office, felt empowering.  
As a newly empowered and energized budding advocate I thank all those who I met last week in Washington.  Until we have a cure, we must band together to help make sure PLWHA have the access to care and medicine that is so vital to keep people alive and healthy. If people do not get the needed medicine I fear a flashback to the 80's; people dieing.  When will Washington come to the rescue? When it's to late?!?

Kevin Maloney
Twitter @RiseUpToHIV
“Voices in unity strengthening community”
Join over 2,040 others who have signed the petition asking Obama and Congress to intervene in this crisis now!

ADAPs with Waiting Lists
(8,655 individuals in 13 states*, as of July 7, 2011)
Alabama: 73 people
Arkansas: 38 people
Florida: 3,513 people
Georgia: 1,659 people
Idaho: 22 people
Louisana: 860 people**
Montana: 29 people
North Carolina: 297 people
Ohio: 492 people
South Carolina: 820 people
Utah: 29 people***
Virginia: 823 people
Wyoming: 0 people

source: adapadvocacyassociation


  1. Great blog, Kevin! Thanks so much in participating in the conference and the Congressional meetings. It was a pleasure to have you on the team and I look forward to the next time we can raid the Hill!!

  2. Hey Kevin,

    Thank you for your support and your great blog.

    Stay tuned! :)


  3. It was great spending time with you in Washington, DC. Keep up the great work!
    big bear hug


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