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HIV Stigma (and my lover Jack) at USCA

At the United States Conference on AIDS in Orlando, I’ve learned that HIV stigma is alive and well. Providers report that client will travel to distant counties to get services just so they aren’t recognized — and that’s if they bother getting tested in the first place.

Jack High Res 1In this video episode, we discuss stigma and the cunning role it continues to play, even among my friends. Now that we don’t look like we have HIV, it’s a lot easier to stay quiet about it — and encourage those who might judge us for being positive.

Jack Mackenroth of Living Positive by Design makes a welcome appearance to remind us what being an out, engaged person with HIV is like. Jack discusses his program’s goal of reducing stigma and encouraging patients to get their HIV viral load under control, in partnership with their doctor. And all that chatting between us gave me just enough time to consider what my fantasy relationship with him would be like. (It looked fairly wonderful, I must say. Until it didn’t. Watch the video and see what I mean.)

Meanwhile, congratulations to the National Minority AIDS Conference and their director, the formidable Paul Kawata, on another successful conference event.

You know who are the real unsung heroes of my videos? The people I grab at the last second and say, “excuse me, would you please hold this camera and film me, please? And hold it just like this, and don’t shake at all, and stop when I tell you, and…” I’ve had perfect strangers do this (what? you thought I had a camera crew?) but on this trip for instance, those good sports included Oriol Gutierrez of Poz Magazine who had the misfortune of being seated next to me, and Olivia Ford from TheBody, and Alison McKeithen from NMAC, and Rachi Govil, who was assisting Living Positive by Design — all of whom had better things to do but I thank them anyway.

Have you disclosed to someone lately, so they might know someone with HIV and help reduce stigma — or are you feeling the effects of HIV stigma yourself, and unable to disclose comfortably? Is stigma better or worse for you than it was a few years ago?

Thanks for watching, and as always, please be well.


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  1. jack mackenroth September 14, 2010 at 4:48 pm

    HAHAHAAHA. Good times!!!!! Thanks mark. “Jack Mack”

    (C’mon, Jack. It was just an interview. Please stop stalking me. — Mark)

  2. Bill Konigsberg September 14, 2010 at 6:56 pm

    Awesome as usual, my friend! I would say that “padded butt panties” disclosures are probably best left to the second or even third date. 🙂

  3. Robert Meek September 14, 2010 at 11:24 pm

    On stigma, or related…

    When I was diagnosed in January of 2002, I was in the hospital where I worked, on the floor that I worked, and the staff that came in to tell me the test results were people I worked with daily, which made it all very weird.

    When I got out, everyone wanted to pretend that they didn’t know, even though they had been my nurses taking care of me, and we all knew that they knew.

    Which made it worse, for a while, but that’s not the point of my post, except to add there was some kind of vague flare-up down the road, and a nursing supervisor snarled at me, that I wasn’t being “discreet” about it, as if it was my fault, the flare-up.

    I waited until I calmed down, confronted her, and pointed out what kind of circumstances I had been diagnosed under (see above) and granted that I had been both defensive and “not discreet” under the circumstances.

    But the point is what went really wrong…

    Our medical insurance was what they call a “self-insured” program that the hospital created, and farmed out to a company to “manage” it for them. But this company, to whom we “filed” our claims, was NOT any kind of insurance company. Their job was merely to manage the program the hospital had created by itself.

    That said, I filed my HIV medication. They were smart enough to not touch that, knowing it would break federal laws, but they went back 3 months in claims, and suddenly denied everything that I’d filed for October, November, and December of 2001! Each time, the put an unsigned Post-It note on it, scribbling “Put this on your drug card,” knowing full well we did NOT have a drug card plan with them.

    We went round and round and round, and I got horribly stressed out, complaining to HR department, Administration, to no avail. I finally threatened legal action, and suddenly they shut up, and accepted the claims.

    So, yes, discrimination comes in all kinds of forms, and still very much exists.

  4. Oriol Gutierrez September 15, 2010 at 4:41 pm

    Mark: I had fun helping out, quite the experience! – Oriol

  5. Nick in Iowa September 16, 2010 at 3:37 am

    You are so talented at delivering serious messages in an entertaining and humorous fashion. Thank you for focusing so deeply on stigma. The discussion is mushrooming…

    (You’re welcome. What a pleasure to meet you at USCA. — Mark)

  6. Birdie September 16, 2010 at 9:29 pm

    Jack has such a great message for ALL of us to hear*. It is absolutely KILLING me that I will not be at this year’s Grande Masquerade in Indianapolis in October, when your fantasy husband will be there as our guest star. (This is the big fundraising event for the Damien Center, Indiana’s premier HIV/AIDS support center.) It seems my mother is celebrating her 90th birthday in Florida the same day. Couldn’t she re-schedule?!

    *You too.

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