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Don't Trust Any AIDS Organization Over 30?

November 26, 2013

Diego Wesley Iglesia

Diego Wesley Iglesia

After more than 30 years into the HIV pandemic, many have proudly proclaimed the end to the age of AIDS. Long live the age of HIV! For most people within North America, and other first-world nations, this sentiment holds true, but as we know, the picture is not as rosy for some of our brothers and sisters around the globe. With this being acknowledged, the follow-up question which springs to mind is "What will the age of HIV look like for us"?

When I was a youngster, around the age of 17, I proudly joined the ranks of ACT UP and marched down the streets of New York City, in the cold dark shadow of the AIDS wards of St. Vincent's Hospital, fighting for the government to pay attention to the corpses of my dead and dying brothers. AIDS was a gay man's disease.

Now, as an adult, I wonder where are the protesting, if not angry, marchers of today's generation as they watch many of their brothers, mostly young gay males, far too many Latino and African American, join the ranks of the new walking wounded? For many years I have been on the front lines, preaching to the choir, or so I thought, about how the face of HIV is only changing for those that have decided to look the other way. This illness is still racing through the veins of far too many males, without much cause for alarm by the government and agencies created to stop this monster in its tracks.

So, here we stand decades later, with greater attention being paid to the illness, more studies of who/where and how the illness is transmitted, a mouthful of drugs on the market, and definitely more AIDS service agencies being created, but what have we really accomplished besides making pharmaceutical companies and executive directors very rich? Please, don't get me wrong, I am beyond pleased with the state of medications currently available to those that are wealthy or poor enough to have access to them. I personally watched friends and lovers rebound from serious illnesses like Lazarus and rejoin the work force, but there must be more for us all to do ... right? HIV is still a gay man's disease.

Two recent studies highlighted the severe number of new cases of HIV infection amongst young gay men of color. Their status replacing the ranks of other communities that have seen a decrease in infection rates as the focus of our communal gaze illuminated their particular struggles. But what about these young gay men; don't their lives have value? Why are we not as outraged at their infection rates as we are with women in Africa, or Atlanta? Is it not possible to hold two thoughts in our heads at one time?

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Is it improper to ask, not only our government, but also the great number of HIV/AIDS services agencies, to address the concerns of gay men at the same time as women and children? Or, did the anxiety over the health and safety of gay males die off with the age of AIDS, considered another "mission accomplished," as we collectively took a sigh of relief and made summer wedding plans?

I have been and will remain a supporter for the equality of all people, regardless of race, sexual orientation, or gender; but we must admit the fight for the lives of gay men is far from over. At some point, we dropped the ball. Of course, anyone can contract HIV, but in the Western world gay men are obviously and continuously the most infected and affected. Ignoring this fact for decades has created a shroud of myth and ignorance around those most likely to spend their lives fighting this illness. We let our brothers down and now far too many will live with the scars of our failures.

What happened to the chorus chants of "never again"? For many gay men, they are living the nightmare we swore they would never see. We all know the numbers, stats, and dire predictions for the rate of infection amongst gay men, yet still no outrage. That is not smoke you smell from behind your back as you look toward the sunrise; that is the putrid aroma of a house in perpetual flame. HIV is a gay man of color's disease.

Yes, personal responsibility, education and self-love must be factored into any logical equation regarding infection, but the heavier lifting was to be done by us, those of us that lived through the first wave of this illness and somehow remain to tell the tale. We, who started organizations to address this Gay Male Health Crisis, need to be held accountable for turning our backs on those that need us most. Because, as my father always told me, "Those of us that have more, have a responsibility to do more." These young men are living and dying from HIV because we have not focused our sights on them with laser-like precision the way we have with other communities at risk.

We have not promoted a culture free from a racial divide which allows people of color, specifically men of color, to run and manage agencies to work "from the inside," with personal knowledge. It was this hands-on life experience which assisted the evolution of information and guidance through the first wave of AIDS. Men, speaking to other men, about what men do. Now, we need men to take their place at the management level again, to speak to other men about what we know they still do. We not only have been where they are; most of us remain there. There is no crime in admitting that male life experience still has value in the conversation about gay male health matters. We are the experts of our lives.

After 30 years of AIDS organizations, it is time that we individually and collectively hold them accountable for the rising infection rates among our young male population. After-care treatment is very important but too many have abandoned the very real notion of HIV prevention methods based on real-life scenarios, cultural competence and gender-specific knowledge. But the fault lies with us, just as much them. Where are the nonprofit watchdogs? If Coke or Pepsi performed to such standards, they would have been out of business decades ago due to our constant protests and boycotts. It is not enough to treat the sick, when you have the capability to prevent their illness in the first place. Outside accountability is a good thing.

So, what can we do, small creatures that we are? First, we can begin asking questions. For example, why is all the new research regarding HIV transmission focused solely on heterosexual practices, with a special note at the bottom specifying that their "findings do not include gay males"? Why are HIV/AIDS organizations not creating new programming specifically by and for gay men and males of color? Why is the management of these agencies no longer representative of the most impacted demographics? Why is it acceptable for gay male infection rates to rise, without real-world solutions? And, why are we so afraid to expose ourselves and state the issues facing gay men as we critique the agencies we empowered to protect us?

As members of the entire LGBTQS community we need to demand organizational transparency in hiring practices, access to leadership roles for qualified gay men and especially those of color, and a re-evaluation of the value we place upon the lives of gay men if we ever truly desire to stop the march of this illness. Or, we can wait and talk about this again in another 30 years.

Diego Wesley Iglesia, J.D., is an AIDS activist, health care policy expert and the founder/chief executive officer of the Gay Male Rights Project (GMRP).


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