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How the fight against AIDS went off the rails #HIV #AIDS

How the fight against AIDS went off the rails #HIV #AIDS

I think a lot about AIDS.

I remember when GRID reared it’s ugly head more than thirty years ago.  It scared the crap out of everybody, and across the globe the gay community galvanized.  People were dying, we didn’t know why – or how to stop it – and our government under Ronald Reagan wasn’t doing a damn thing about it.

Celebrities stepped up to the microphone to lend their muscle to the fight.  For decades, Elizabeth Taylor loaned her muscle to the AIDS fight, and you know what?  It’s irrefutable that the advances that were to come in the next decade were due to Ms. Taylor saying (in effect), “this has to end and here’s what we need to do”.

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It’s also a simple fact of life that a new political action group called ACT UP! was going to change the face of the AIDS fight.  From 1987 to 1991, nobody had seen anything like them.  They weren’t just demonstrators, they were anarchists.  In your face, raising hell and demanding that actions be taken by those in power.  Hitting Wall Street for three consecutive years, hundreds were arrested, and their actions directly lead to Burroughs Wellcome lowering the price of AZT to an accessible price tag.  Prior to that, it was so exorbitantly priced that virtually no HIV positive person could have afforded it.  Keep in mind too that back then there was no Ryan White ACT, no ADAP, and insurance companies were routinely denying treatment to their subscribers.

Nobody had seen anything like them, and most of the time the actions they took made the papers for the next eight years.  If you didn’t know anything about AIDS before ACT UP, you sure as hell did by the time you’d put down the evening paper or turned off the nightly news.

A little kid name Ryan became the public face of AIDS.  Every time a new piece of the AIDS quilt was added, the gay community felt another piece of their heart break off.  By now, AIDS was well past being identified as just a gay disease anymore.  It was readily apparent that it was never just something that would only affect gay men.

The best scientific minds in the world jumped on the case, and by 1995 (or was it 96?), a pharmacological solution to AIDS graduated past the toxic AZT.  The Ryan White Act had been in place for a few years now (Ryan died in 1990, and months later the program was named in his honor), and those who were HIV positive found health care accessible when their finances and/or insurance had failed them.

Right about here it began.  The war against AIDS had less men on the battlefield, the press cared just a little bit less, and that galvanized gay community that had stood shoulder-to-shoulder in the AIDS war had started separating a few inches apart.  In everyone’s mind the war had become just a fight, then a concern, and then a distant memory.  Rage against the virus had been replaced with apathy; a state of mind that’s out there to this very day.

Journalists and bloggers, gay and straight moved on and to this day coverage on HIV/AIDS is minimal to non-existent (from an earlier piece I wrote on this):

  • According to the Kaiser Foundation in 1995, 46% of those asked responded that they felt HIV/AIDS was the nations most urgent health problem.  Fourteen years later just 6% of those asked said the same thing.  HIV news articles have dropped 70% in the same amount of time, and the general public goes on it’s merry way.  Gay/bi men have adopted a very blasé attitude towards HIV because nobody is stepping up to the microphone to tell them anything differently.
  • Along the same lines, LGBT bloggers are failing miserably when it comes to reporting on HIV despite their claims of being there to report LGBT impacting news.  Within in the community, name recognizable blogs have next to nothing on the subject.  I looked thru 365 Gay News, After Elton, Big Gay News, Box Turtle Bulletin, Gay News from Gay Agenda, Joe My God, LGBT POV, Out in America, Queerty, The Bilerico Project, Towleroad, and the Washington Blade for a mention of this special being on television last night and not one of them had a single word of it.  Zero, zip, nada.  Most of them found it newsworthy to keep regurgitating the YouTube video of Sarah Palin breathing though.  How can you run a website that’s for the gay community and not run a single piece of information on HIV?  The hypocracy is staggering, and it’s also sending a message:  There’s nothing to talk about on HIV, so be on your way.  We’ll let you know when it’s time to pay attention.  (NOTE:  The only website that really gets off the hook here is The Bilerico Project as they will occasionally run HIV related content).

Eighteen months after I wrote that, not much has changed.  The sites I inspected then have still done little to report on HIV/AIDS, though JoeMyGod attempts to.  He does, however, either miss facts entirely or flat out get his poach/copy/paste wronga fact I’ve railed on a few times now.  So, let’s review this transition shall we?
  1. Mainstream journalism has moved on
  2. Gay bloggers have moved on.  Far more pressing matters of repealing DADT, ENDA and gay marriage have taken precedence over something as trivial as a virus.
  3. The majority of gay men have moved on.  HIV/AIDS has transitioned from something you wanted to move heaven and earth not to catch, to “meh, I catch it I’ll just have to take a pill and all will be well, right?”.

Except that’s not quite right.  People are indeed living longer, though there is no cure for AIDS.  Medications are wonderful, though it’s still a fact of life that you can have some hellacious side effects from them.  Sometimes, depending on your particular strain of virus, it’s going to take your physician more than one try to get your medications correct.

HIV stigma, which began in the early days of GRID, transitioned into something far more subtle (from my earlier piece above)

Three decades after the first diagnosis, and we’ve moved marginally closer to changing attitudes on being tested.  More often than not, a person doesn’t even know their status because they don’t want to know.  The message that’s still being sent out is “drug and disease free- you be too”, “clean only”.  People with HIV are being told that their disease is not acceptable, not welcome and in general they can expect to be shunned if they made the disclosure that they have HIV.

Why?  Why is HIV still being marginalized?  Would you even dream of telling this to someone with diabetes, asthma or cancer?

Back in the days when dinosaurs roamed the earth, HIV was a gay disease.  Gay men got it, and it was God’s punishment for they way they lived.  Then man created fire, and realized that gays weren’t the only ones getting it.  Straight people were getting it, seniors, kids, but there still was that lingering undercurrent that people got HIV because of the things they’d done (i.e., junkies, gay, promiscuity). The banner of “unclean” still hangs over those with HIV.  The morality police are still working full time, they just fulfill their duties undercover.  So, you have a three-fold problem:

1.  People aren’t getting tested.  They either think they’re immune from getting it (rarely), they don’t want to know if they’ve gotten it for fear of joining the unclean masses.

2.  People who do get tested and have it keep it to themselves.  Their shoulders aren’t big enough to carry the scarlet “A”, so they resign themselves to a self-imposed exile of fear and loneliness.

3.  People that do get it, and put it out in the open risk being turned into outcasts by the very community they hope to rely on.  The unspoken message of “you must have done something to deserve HIV, so I’m not interested” comes thru loud and clear.

The result of this mental segregation and apathy is pretty scary.  Of those that were surveyed:

  • 80% are aware of their infection
  • 62% are linked to HIV care
  • 41% are retained in HIV care
  • 36% receive anti-retroviral therapy
  • 28% have their virus under control
That, to me is extraordinarily depressing.  Less than 1/2 of the people who are positive are even in regular health care.  Less than a 1/3 of the people who have been tested and diagnosed as positive have their virus under control.  AIDS became something other than a war, it became a fact of life that just exists.  You will soon be able to test your HIV status from the comfort of your very own home, and if you’re one of the ones who’s got a few bucks in the bank, a pill a day has an extraordinary chance of preventing your seroconversion all on it’s own.
HIV just “is”.
HIV happens, just get over it.
It’s not the problem it was 30 years ago, right?
Wrong.
HIV is only manageable for those that are ON treatment, and even then that’s a slippery slope.  Pharmaceuticals are great, but there’s no assurance that your particular strain of the virus will respond to them on the first try, so it may take your doctor quite a few tries before they find the right cocktail for you.  Even then, there is a risk of serious medical side effects, drug resistance and other health complications.
The fight against AIDS never should have gone off the rails, but it did.  Isn’t it time we got it back where it belongs?  We’re the most powerful country in the world, yet 3,000 people who know their HIV status can’t get access to the healthcare and medicine they need, and that says nothing of those who are infected worldwide in other countries.  There’s a generation of people coming up behind those of us who have been at this a while who actually think, “well, you just take a pill to fix it right?  It’s like diabetes.”
It’s time to finish this fight that started more than 30 years ago, and there’s less time on the clock now.  The fighters from the battlefield of the 80′s and 90′s are thinning in ranks.  Some of us are gone.  Some of us just got old.  Alot of us are tired, not just physically but mentally too.
You can only keep swinging for so long before you decide that you need more than fumes to run on.  You can only put your own life on hold so long before you’ve decided that your personal sacrifice has been made.  As I look at some of the generals in the POZ army, I realize I’ve known some of these people for a very long time.  They’re far better fighters than I am, far more visible and far more active.  I can’t help but wonder: if I asked each of them “How much do you have left to give?”, I wonder how’d they’d answer.  Every single one of them is a dedicated, wonderful individual, but they’re only human too.
And, as I look behind me, I wonder which one(s) of the next generation are going to grab the baton when it’s handed off.
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How the fight against AIDS went off the rails #HIV #AIDS, 10.0 out of 10 based on 2 ratings
  • http://www.cbsnews.com/religionandculture Kinekel

    Appreciate this post.  I am a member of the news media and wanted to let you know that we are working on a half-hour special to air June 17th called HIV&AIDS: Awareness & Compassion. The program looks at a small but growing movement within the faith community to fight stigma. We shot in Tampa, Boston and Washington, DC.  The show will air on CBS. Local listings are here: https://www.facebook.com/note.php?note_id=269143463184567
    And our press release is here – http://www.cbspressexpress.com/cbs-news/releases/view?id=31813
    I found you on twitter!

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    • sayencrowolf

      If at all possible, I’d LOVE to see this in advance of the air date so I can review and post it on here.  I have a pretty loyal following in terms of my HIV coverage, and I’m sure they’d all be interested in hearing about what you’ve put together.

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      • Liz

        Can you DM me? I believe you should have my email….

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        • sayencrowolf

          Happy to, what’s your twitter handle?

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          • http://www.cbsnews.com/religionandculture Kinekel

            @ @lizkineke:disqus or email me at the email listed when i post. (are you able to see it?)

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  • WandaBrendleMoss

    You hit the proverbial nail in the head!
    Extremely well said.

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