April 26, 2013
Where the Hell Is Our Community?
by Michael Kaplan
The president and CEO of AIDS United takes LGBT leadership to task for not prioritizing HIV/AIDS.
Where the hell is our community?
I've been reading And the Band Played On, and for some reason, it feels more like a commentary on today's news than a historical account of the discovery of AIDS. As I read about the emerging infections on both coasts, along with Kaposi's sarcoma and pneumonia leading to gay-related immune deficiency (GRID) -- eventually named acquired immune deficiency syndrome (AIDS) -- the pages reveal a disturbing struggle to get anyone to care about it, even the gay community, which was being hit so horribly hard.
Chapter 13, April 2, 1982: "[O]f the 300 cases in United States, 242 were gay or bisexual men, 30 were heterosexual men, 10 were heterosexual women, and 18 were men of unknown sexual orientation." Today, 31 years later, the Centers for Disease Control and Prevention (CDC) estimates that more than 1.1 million people are living with HIV and AIDS in the United States, and the vast majority are still gay men.
This month I was invited to participate in a meeting of more than a dozen federal legislators and a dozen leaders from the lesbian, gay, bisexual, transgender and queer (LGBTQ) community. The meeting was to talk about the LGBTQ community's political priorities.
I discovered that I was fully out of sync with my fellow national LGBTQ leaders. The conversation went something like this: Defense of Marriage Act (DOMA), Employment Non-Discrimination Act (ENDA), DOMA, DOMA, ENDA, immigration, DOMA, ENDA. Had I not been there, I truly believe that HIV would have never been mentioned at all.
Don't get me wrong: I believe that gay marriage, employment nondiscrimination and reforming immigration laws as they pertain to same-sex couples are worthy battles and should be priorities. But I'm heartbroken that HIV/AIDS has fallen off the gay radar. In fact, it hasn't mrely fallen off; it's been politely removed! It feels like it has been set aside because it requires conversations about more difficult topics, like sex, drugs and poverty, unlike the less-complicated message of love that is the cornerstone of the marriage talking points. We've de-sexed "gay" to win political wars about marriage and, as a result, abandoned confronting a sexually transmitted infection that is devastating our community.
In 2011, with an estimated 49,273 new HIV infections in the U.S., some 31,890 were among men who have sex with men, according to the CDC. In some major cities, CDC-funded research estimates that as many as 20 percent of all men who have sex with men are now HIV-positive. And if you break that down to race, I've heard it said that the chances of a young black man who has sex with men becoming HIV-positive before he is 50 is close to 1 in 2. Gay men are the only community that continues to see an increase in new infections.
Where the hell is our community?
Chapter 15, 1982: "[Marcus] Conant ... had the knowhow and resources to conquer this disease ... We could win the fight, but nobody is willing to make the effort or even acknowledge there is a battle out there to be won." To be sure, years later, the battle became clear, and resources were mobilized. As infections spread to the more "valued" among us, like hemophiliacs, "innocent" children and heterosexuals, America took note. By 1990 the Ryan White Act was passed, and systems of care began to grow. But it wasn't until the last three years that the statement "we can win the fight" became true, at least in my opinion. Today, thanks to research funded by the National Institutes of Health (NIH), we know that early treatment can reduce sexual transmission by 96 percent. We know that if we truly scaled up testing, told every member of our community, "You need to know your status, and you need to be part of the solution," and helped those who are infected get into care, we could probably half the infections in no time.
But instead, our community has decided that we can live with this, I think. We can all take pills when it gets bad and manage as we need. Folks are living longer, treatments work, and, yes, I can still do my job, have sex and be loved. But let us not forget that the lifetime treatment cost is estimated to be over $350,000 per infection. Every day we are diverting billions from our own community to take care of that virus that we dare not stop. Let us not forget that 15,000 folks still die every year after living with an HIV-positive diagnosis. Each year 9,000 men who have sex with men who previously lived with HIV are now dead. We're losing more gay and bisexual men with HIV each year across the U.S than the average gay pride festival often dreams of pulling in.
Our community has decided to live with this, not talk about it, but live with it. Heads held high as we fight for gay marriage, employment nondiscrimination and so much more, but please, just please don't talk about sex, let alone AIDS! The thing is that we don't have to live with HIV. I mean some of us do -- I do -- but as a community, we can end this. We can all know our HIV status tomorrow, we can get into treatment, and we can be the ones who write the last chapter of this epidemic, the ones who finally stop the band from playing on and on.
Of course we gay people deserve the same rights like marriage and employment nondiscrimination! Heck, I want that. But let's not kid ourselves: Some in our community will pick that monogamous relationship, but others will not. And the vast majority will not go "straight" to marriage, do not pass dating, but instead will become part of that growing pool of young gay men in major cities, that pool in which one in five is now infected. We can live with this, but we don't have to. We can change it when our community as a whole says, "Not knowing your status is unacceptable," and, "Getting linked to care is as important as flying the rainbow flag."
We can end this epidemic, but until our community talks about it, makes it a priority, says, "HIV is at the top of our agenda," I fear we will only see more generations of young gay men becoming infected. I fear that the band will indeed be playing on and on and on.
Where the hell is our community?
Michael Kaplan is president and CEO of AIDS United. This article originally was published on The Huffington Post.
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comments 15 - 26 (of 26 total)
mark, Brooklyn, 2013-05-02 15:50:20
Thank you for you're article on this subject and hope for more in the future. I agree with you 100%. I stopped some years ago socializing in the communities because of the very same things you written about and found myself alone. But did return to school and graduated college and have a new profession - healthcare. Today, some don't see it as their problem and others are "oh well take a pill."
Garrh, Elizabeth City, 2013-05-02 13:28:06
I have been asking that question for a while now. If we as a community don't address this.there will be dire consequences. ADAPs in almost all states amd at the federal levels are threatened. What happened to our battle cry Silence =Death? I have been living with AIDS since 1989. Being able to marry is a fine and nobel fight. To continue to ignore this battle will mean death.
JTRinSIA, Iowa, 2013-05-02 10:10:35
To add a bit more irony to Michael's commentary, while so many in our community seem to no longer deem HIV/AIDS important enough to be a priority, they are also more than happy (or so it seems) to continue to stigmatize those living with the disease. It's a 'Let's not deal with the issue of testing and being proactive, but let's be judgmental nonetheless about our 'brothers and sisters' who have the disease.' To them I say, 'Get over yourself, and get tested!'
Richard, Redwood City, 2013-04-30 18:16:33
This was an amazing article. Thanks so much for putting the truth firmly in our faces. Truth hurts but it's the truth. We have every obligation to ourselves, the USA and the World to stop this dead. I've been POZ for over 25 years. I've had my ups and downs, of course but I'm a strong advocate for getting folks educated in my own circle. Taking good care of myself and creating a healthy mind body and spirit (never ending process) BUT it sets positive examples to those around me. Hugs!
Patrick, Nashville, 2013-04-30 12:02:24
Great post, and I totally agree to what is happening in Nashville. I am not one of the lucky ones that found out early. When diagnosed with PCP pneumonia and a T cell count of 9 it was too late to live a normal life of working and pretending this was just a bad cold. Now on disability, harmful antibiotics I will take the rest of my life, I have been forced to sell my home and move to a state that has more options for care. Medicare will only cover meds for three months in tn. NOT OVER!!!!!!
Ben Richard, Hartford, CT, 2013-04-30 10:12:28
Who are thesse gay community leaders? Who elected them to their august positions in the gay community? Money, not gay folk, placed them in these positions. As far as AIDS care in my local community I have never seen so many incompetent people in my life. Gay men?...forget it! They are too busy on their ipads or iphones to give much of a care for the man right next to them! I give up...I'm heading for a cloister!
Rob Cooke, Washington D.C., 2013-04-29 20:15:23
I thoroughly agree Michael! It saddens me that even the issues of HIV/AIDS has taken the back seat even in our own nation's capital as other gay issues take the spotlight!
Glenn Miler, San Francisco, 2013-04-29 12:50:32
I swear all I've heard are crickets since the GOP put he squeeze on Ryan White and Section 8 funding after Bill Clinton left office. WTF
Andy, Cleveland, 2013-04-27 12:37:23
I think this blog was very close to what we need to say, but it misses a key problem. You stated that "not knowing your status is unacceptable". The problem is that we've said this for a long time. It's a complete failure of social contract though. You're only congratulated for "knowing your status" if your status is negative. Test positive, and people ignore you, reduce you to a pariah or criminal. No rational person who thinks they may be poz will get tested under these conditions.
Dan, WI, 2013-04-26 14:38:51
Thank you! I came to the same conclusion recently. The mantra that "HIV/AIDS isn't a gay disease" ultimately does everyone a disservice.
Frederick Wrght, Coachella Valley, 2013-04-26 12:44:02
I was told by many of our people’s leadership that AIDS Muddy's waters. Most of these self-proclaimed leaders in LGBTQ works are out of touch with social justice issues to run away from any conversation about HIV. Similar to most Churches for they will tell a story of someone they accepted with AIDS and then say, down the road is a Group that deals with that issue. Meaning with have people to deal with it over there and truly to afraid to bring AIDS or HIV up over here. Trauma, Shame an Excuse
Robert W Toth, Cleveland, Ohio, 2013-04-26 12:28:22
comments 15 - 26 (of 26 total)
I was just decrying this lack of a long-term survivor support group in my area known to have MANY PLWH/A's. Maybe we're tired, having been "In The Fight", [for me since 1985 and poz since '88] or maybe we're not dying fast enough; there isn't any sense of urgency NOR Community. There's the A/A, Latino/a, Sober, Str8 female/male w/AIDS groups - All wanting/needing their voices 2 B heard. I do have a haunting feeling that their will be a "Second Wave" of AIDS deaths when long-term HAART fails.
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