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The New National Voice of People with HIV is…

At a recent town hall forum in Washington, DC for people living with HIV, the very idea of what it means to be positive — and who is our national voice of advocacy — was questioned. With the demise of The National Association of People with AIDS (NAPWA) earlier this year, it’s an important conversation to have.

The forum, sponsored by the Federal AIDS Policy Partnership, a coalition of AIDS-related organizations and interests, didn’t bear much fruit in terms of hearing the feedback of people living with the disease. The event was lightly attended in person, with most of those living with HIV present representing some organization or another, and the online viewers had technical problems and, presumably as a result, contributed very little.

The most compelling minutes of the event, to me at least, were courtesy of the sheer audacity of former administrators from NAPWA (like Frank Oldham, pictured above), who made a pitch for their new HIV advocacy venture. After bankrupting a multi-million dollar agency and charges of financial malfeasance, you’d think they would opt for a lower profile. In this video episode of My Fabulous Disease, I take them to task and even provide a dramatic reenactment of some of their organizational negotiations. I can’t wait for you to see it.

The day following the forum I attended a scheduled meeting of the the Federal AIDS Policy Partnership (FAPP), and heard excellent presentations on the state of Ryan White during healthcare reform (iffy but hopeful), and how we as people with HIV can best navigate Obamacare (tip: go directly to www.HIVHealthReform.org and get educated).

In light of the town forum they hosted, I also strongly encouraged FAPP to add seats on their body specifically for people with HIV — or for representatives from coalitions for people with HIV — so there would be voices of people with HIV that wore no other hats or were tied to other agencies or agendas. I look forward to giving you an update on whatever steps they might take in this regard.

Thanks for watching, and please be well.

Mark

p.s. Frank Oldham has resigned from his position with Pozitively Healthy. Should other NAPWA officials involved in the new endeavor follow suit?

Comments

comments

7 Comments

  1. Eddie Hamilton May 24, 2013 at 9:48 am

    Do you not think we have enough organizations within the Beltway ( that stay within the beltway) that have more acronyms than an alphabet soup?

    At the grassroots level, many are sick of them! The problem is finding people without an agenda and all that they do is fundraise and blow money more than any politician! All of that money could go directly to service ( care and prevention) instead of feel good conferences.

  2. Aaron Laxton May 24, 2013 at 12:37 pm

    I agree with Eddie. When I read the news regarding this announcement I had to scratch my head. In my opinion it is a group attempting to fill the void when in essence there are multiple groups and organizations that have already been doing that very thing, long before NAPWA went belly-up.

  3. Kim Johnson May 24, 2013 at 1:47 pm

    Good job, Mark.

  4. cliffwms44 May 24, 2013 at 6:12 pm

    I think they will be another organization sinking,we need a representative that will not sellout,never forgets where they came from and that will speak for everyone not just to push their own agenda. I don’t know but some of the best horn blowers in HIV/AIDS were within camera range. They did not all start out this way,but new faces bring newer bodies new energy and passion. I don’t understand people though because this disease if we are all infected makes us all equal.
    Mark your a funny dude great spot.
    Check your lens though because the vulchers circled within lens shot. Many of whom you spoke to represent groups that I in fact question so those connected guilty by association.

  5. Mark Hubbard May 25, 2013 at 8:33 pm

    According to the Washington Blade, Frank Oldham has resigned from Positively Healthy

    http://www.scribd.com/doc/143305602/Washingtonblade-com-Volume-44-Issue-21-May-24-2013

  6. Marissa May 29, 2013 at 3:55 am

    Thank you for your voice!! Very much needed now these days! Thank You!

  7. Joe T May 29, 2013 at 12:30 pm

    I think, Mr King, you are! Wonderful and well spoken and loving the beard!

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