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April 18th, 2010

Has my AIDS crisis ended?

A few weeks ago I spent the day at the Florida AIDS Walk, and it was striking how different it was from the Walks I attended years ago. Smiling faces, racial and ethnic diversity, baby strollers, and most of all a feeling of happiness and celebration. That’s progress, right?

MarkBarneyGrabBut when I speak of the AIDS “crisis mentality” being over for gay men like me, I’m treated like a heretic. I don’t mean to disrespect those who are suffering, or for the devastation that AIDS clearly continues to wreak on much of the world. But please, hear this: I lived through the 1980’s. I went to weekly funerals and lived in daily, mortal fear for my life. Friends stayed in my guest room on their way to hospice care, or simply died before making it that far. That was a crisis state, my friends, and I’m no longer living in it. The crisis, as I have known it, has passed.

In this episode of the My Fabulous Disease video series, I chat about this post-crisis mentality with Rep. Barney Frank, arguably the most powerful gay man in America. His measured response may surprise you.

The evidence of this perspective among other gay men is everywhere, for better or worse. My friends are more likely to give to the Human Rights Campaign than the local AIDS Walk. HIV tests are a casual, albeit unnerving, clinical habit among HIV negative men. And the choices gay men are making regarding safer sex, barebacking and serosorting suggest they are making those choices out of pragmatism, not mortal fear. Even the illusive HIV bug-chasers of urban legend are fading from consciousness and into the internet ozone.

Certainly we shouldn’t decrease HIV prevention efforts (for those reactionaries ready to take offense at my honest observations). But one thing I learned from my years designing prevention campaigns for gay men: our tolerance for bullshit is pretty low. Prevention advocates can’t keep screaming “the sky is falling!” to gay men for whom HIV/AIDS has become normalized, or at least far less traumatic.

Yes, we must do something about new infection rates among young gay men. I just don’t believe the answer is to play “boo!” with a monster they have lived with for their entire lives. Our young brothers deserve a more intelligent, thoughtful approach than that.

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7 Responses to “Has my AIDS crisis ended?”

  1. Robert Meek Says:

    April 18th, 2010 at 11:06 pm

    You are very correct, obviously the answer is not to ” play ‘boo’ with a monster” for many reasons.

    One reason is it does not work. At least, not anymore. If it did, the rate of new infections would be exceedingly low by now, for sure.

    I don’t pretend to have any ideas as to any answers. I just don’t know. It has become, in many ways, “normalized,” if you will.

  2. Jim Pickett Says:

    April 19th, 2010 at 7:39 am

    I would argue we need to do much more than create new prevention messages that aren’t based on scare tactics.

    There are major structural issues at play here – access to care, poverty, institutional homophobia, human and civil rights – that are helping to drive new infections. We seem to get stuck on the individual – and miss the forest for the trees.

    In Chicago, approximately 1/3 of gay black men have HIV, according to a recent study. This compares to about 1/5 of gay white men in Chicago who are HIV positive. The study found that gay black men were not engaging in more risk behavior than white men, in fact, it was a little less.

    Most HIV infections happen with people who don’t know their status. Why? One reason, a big reason, is we’re not directing our resources to populations most at risk. CDC spends approximately $650 million per year on HIV prevention activities. Approximately $300 million of that goes to state and city health departments that have consistently under-funded services targeting gay and bisexual men. Between 2005-2007, only 29% of federal risk- reduction funding managed by state and local health departments supported services for gay/bi/MSM.

    In 2009, only 20% of gay/bi/MSM had access to HIV prevention services, according to the CDC.

    It is no surprise that gay men are the only population in the country where rates are rising. We, the collective we, have failed them, terribly.

  3. leann m. rossi Says:

    April 19th, 2010 at 8:55 am

    Mark you amaze me and I am one of the lucky ones too…. I have a daily reprieve from my addiction as long as I address it. I have followed you on your path for many years and as you continue to reinvent your ‘wheel of life’ I can honestly say…. you have been cured…. you have been cured of all the hatred and negativity that went along with your quadrupal diagnosis (wow you really hit the jackpot here). But look how you have helped turn it around…. at the forefront is Mark the crusader…. and guess what people…. he never gave up… and this was God’s plan all along…. his cure was to ultimately get the focus off of the disease and to show how incredible the people really are…. and your absolutely right Mark….. as always a ‘tragedy’ at the box office fares better than ‘Disney’. I love my fabulous diseases too ….. because no matter what may consume me, it will never have me, as long as I am willing to change. I love you and miss you Mark but I know where to find you and for that you are never far from my heart.

  4. TuskPDX Says:

    April 20th, 2010 at 8:53 am

    Hi Mark. 28 yrs into this “fabulous disease” here.

    I think this illusion that the aids crisis is largely over is good for just about thirty days. That means, in thirty days – when your government-supplied/ADAP’d HIV meds run out – you return to square one, or actually several steps behind square one. With only 200 T cells, my square one is a lot closer to death than your square one.

    I might point out, that the basic three meds I take daily (my cocktail) cost my insurer about $3000 a month without any other medical bills thrown in. That’s $36,000 a year for just standard anti-HIV therapy alone. Add up doctor’s care, other meds, vitamins, etc and the cost is staggering. Just 20 minutes with my doctor costs over $375. So I would conservatively at best put the yearly cost of my “aids crisis is over” fantasy at more than $60,000. Guess what happens if we don’t get these basic essential services? We suffer greatly and die. Quickly.

    Not to mention that I have to stay “poor” to receive above services. Gee, that’s fun.

    Multiply those numbers by the number of statewide ADAP programs that have just released figures this week of crisis level record enrollments and waiting lists and the situation is very serious. We are all tethered to programs providing life and death chemotherapy and if those lifelines are broken, or you leave your state or country, you at risk of death.

    Want to retire to some foreign country? Forget about it. Add drug resistance into the picture, without future profit incentive from the pharma industry due to healthcare changes, the 1990s might not be too far away unfortunately.

    Yes, of course, we are much better off than the horrors we all endured 1980-2000. But are we safe? Not in a long shot. Just staying alive for tens of thousands of us (who don’t get trips to plastic surgery clinics) is about all we can handle. I mean that with love and concern, but it’s true.

    The HIV infection rate is growing fast in the youth and the elderly. It breaks my heart when I counsel a 20 yr old kid who tells me his life is over because he already shows the classic telltale physical giveaways that will haunt him the rest of his life. His peer group that worships youth and beauty has now turned against him. Quality of life is everything.

    Just staying alive is not my total goal. It used to be. But after three decades of painful wisdom, it seems prudent, now more than ever, to get your act together and live in the present. There are no guarantees of anything other than in the moment you are sitting.

    Do I dare say, stay positive? Counting all blessings, tusk

  5. Sue Says:

    April 20th, 2010 at 9:22 am

    It is amazing how far we have come. It is coming from hopelessness to hope. But I can’t stop thinking about those who aren’t here. In KC we have sponsored Memorial Banners for those we lost. I have nearly ten banners I sponsor, one of them my son, so the Walk continues to be painful for me and my family. I am grateful for the change, but struggle to let go of the anger at those that let this epidemic happen because it was first impacting the gay community. May they not rest in hell.

  6. Robert Meek Says:

    April 20th, 2010 at 3:51 pm

    Has anyone seen this article? It’s rather telling.

    “The Other City” — AIDS in America, Nearly 30 Years Later

    http://www.huffingtonpost.com/jose-antonio-vargas/aids-in-america-30-years_b_544202.html

  7. Dr. WIL Says:

    April 21st, 2010 at 11:42 am

    I don’t have the answer to this nightmare we are now in. But I can say that in my local community (El Dorado County, California) they have terminated ALL HIV education under the banner of “we don’t have the money” or “it is not up to this HIV/AIDS Service to provide that or testing anymore.”

    When I did the local research I learned that the only HIV/AIDS education being done in this county is a simple one-day/one-class lecture a teacher gives in sex-ed and then HIV is tossed in with all other STD’s.

    When I called my local Health Department and asked where I should go to get an HIV test I was told “we no longer provide that service, try Sacramento (about 60 miles away) or your local doctor.”

    When I tried my local doctor I was told that my medical insurance (Blue Cross/Blue Shield) would pay for a single test per-year but only if I confessed to having unsafe sex with someone who had HIV and that information would be made a part of my records.

    So, now we know why the HIV rates are on a rise in this county and why so many now actually “refuse” to get tested at all.

    But I can say that the El Dorado County Public Health Department did put my worries at easy when they said that “this is now the norm in many if not most Counties in the state since HIV/AIDS is so easily treated and we simply don’t have the funds like we once did for this type of testing.”

    So – who was it that dropped the ball on this one?

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