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Time to reconnect gay and AIDS communities

Rethinking strategies after decades of drift

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Dave Purdy, Washington Blade, gay news
Dave Purdy, Washington Blade, gay news

Dave Purdy (Washington Blade photo by Michael Key)

By DAVE PURDY

Last April I attended a White House LGBT Conference on HIV and AIDS, held at Morehouse School of Medicine in Atlanta. Following the meeting I posed a question to two leaders responsible for AIDS and LGBT issues in the White House:  “When did the gay community separate from the AIDS community?” At first, I think they were surprised. After all, the gay community created the AIDS community. But now they are going in different directions.

I asked a second question: “Do you think if the gay and AIDS communities worked as one, as they did in the ‘80s and early ‘90s during the height of the U.S. epidemic, we would improve the chances of winning the war against this dreaded disease?”

“Absolutely,” they replied.

What happened and when did the separation occur? And how can we bring them together again?

First, a little history. On Jan. 4, 1982, following the Centers for Disease Control’s confirmation that the “new disease” is an epidemic, six gay men met in the Manhattan apartment of Larry Kramer, the author and playwright, to discuss “gay cancer,” now known as Kaposi’s Sarcoma. That day they created the Gay Men’s Health Crisis (GMHC), the world’s first AIDS organization.

In a few years, GMHC was also supporting straight men and women, children, hemophiliacs, drug users and blood transfusion recipients. Kramer also helped establish another entity, ACT UP, to generate and build support for the rights of AIDS patients through political protest. As GMHC continued its work, I remember talking with people who actually wanted GMHC to remove the word “gay” from its name.

Prior to AIDS, there was GRID (Gay-Related Immune Deficiency). It was the Centers for Disease Control that changed the name to AIDS (Acquired Immunodeficiency Syndrome), a more accurate description of the disease. Of course, we all knew retaining the word “gay” could hold down funding, research and support.

In the early days of the disease, hospital rules and state laws commonly denied gay men visits with their partners; in many cases, the families prevented contact, as well. Thus, thousands of AIDS-infected gay men died alone and many never received a proper burial.

It’s time to link gay and AIDS again. It was the gay community that created the AIDS community and, in many cases, it was the AIDS community that helped support and raise awareness of the gay community.

One example is GLAAD (the Gay & Lesbian Alliance Against Defamation), established in 1985 specifically to fight the stigma of AIDS and sensationalized reporting in the media. But will you find the word AIDS on the GLAAD website today? Rarely, as is the case for a number of our largest gay organizations.

The words gay and AIDS have been synonymous. Being a gay man and living with HIV in the United States definitely has its challenges, but they’re nothing compared with being gay and HIV positive in other parts of the world. In some countries, it’s common to be banished from your village or town, ostracized, or beaten and, in many cases, killed. Throughout the world, gay men with HIV are dying, not killed by AIDS, but murdered.

Before the 19th International AIDS Conference I discussed this separation of communities with staffers connected to one of the largest LGBT organizations. In addition to other issues, their responsibility includes HIV. When I asked how and when the separation occurred, they denied there was a problem. The gays have their issues and organizations, they pointed out, and those living with HIV and AIDS have theirs – it’s all covered.

Covered? Really? According to the CDC, young gay men and MSM account for 69 percent of all new HIV infections among persons aged 13–29. Also, the number of new infections in this country has never decreased. Never.

Every AIDS organization should have a division and point person whose sole focus is gay-related issues, and every gay organization should have an AIDS division and expert. That way, resources, ideas, and strategies can be shared, benefitting both communities, which could lead to the kind of power that could end AIDS and homophobia forever.

Dave Purdy is founder and CEO of the World AIDS Institute. Reach him at [email protected].

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9 Comments

9 Comments

  1. Krishna Stone

    January 24, 2013 at 12:03 pm

    Hello:
    Thank you for including Gay Men’s Health Crisis (GMHC) in your article. We will post it on our Facebook and Twitter pages.

    Krishna Stone
    Communications Department – GMHC

  2. Anonymous

    January 25, 2013 at 10:15 am

    I think that our focus on gay marriage as a culture is spot on.

    Gay men are starved for the sort of meaning that can come from committing in relationships and pursuing an active role in our society, and that means gay marriage, volunteer movements, careers, art. To put it crudely, we are worth more than our assholes.

    Casual sex is the link between gay men and AIDS. I say we break the link, not reinforce it. Encouraging monogamy, not just preaching it but really developing it, is going to be a significant long term investment for gay men.

    A little pro-gay rights conservativism could save us, so I say we stop allowing our loudest advocates to express hatred toward conservative ideals. Let's strike a middle ground here.

    • William

      January 26, 2013 at 11:42 am

      Thank you…. it might be a minority viewpoint, but as a gay man, I agree with you 100%. There’s a lot of shouting out there on other issues, including this one, but most gay men and women do not have HIV and probably won’t ever contract it. We are more likely to die of heart disease and cancer. Those are the facts. Yet, I don’t think we ever “disconnected.” I think that HIV and AIDS remains in the back of everyone’s mind, gay or straight, when it comes to sexual intercourse. What I don’t quite understand is what exactly constitutes the “gay community” and further to that, what is the “AIDS community”, and especially at what point and how is it perceived that some sort of separation occurred. Is it the amount of media attention given to the gay marriage cultural wars vs. this issue? That’s media. They focus on what’s hot and popular at the moment. Tomorrow, it’ll be a scandal in Congress. Is it the political agenda of certain “gay” organizations? Many of those groups have gone so far away from the everyday person, their interests are money and lobbying, not action. Is it statistics? Numbers can be twisted to make whatever point you’d like to make (sorry, I don’t think doing “quick tests” outside bathhouses and bars — read up on the studies to find out the most recent figures were obtained — accurately reflect HIV status much less a “community” at large.) I see that some people are angry and upset, and some of that is coming towards the “gay community,” but I still can’t understand what it is that they are angry about. I still find a great deal of compassion towards our friends and family with HIV, support for continuing research to fight this disease, and advocacy at large. We haven’t separated — but we’re no longer two distinct entities joining forces — we’re just people of this country, straight, gay, bi, trans, positive, negative, who press society to do what is right in all matters.

  3. Ted Faigle

    January 26, 2013 at 2:07 am

    The split between the gay male community and HIV/AIDS was intentionally and, I think, mistakenly effected when primarily gay researchers in the 1980s decided to introduce the alternate identity of "MSM," for Men who have Sex with Men but who are not necessarily gay. Though I understand the impulse to want to separate disease from identity & tie it to behavior, I still cringe when I hear this term which covers out gay men as well as those who refuse to come out of the closet. I deeply resent this as I have witnessed how it allows guys on the down low to remain homophobic while enjoying the benefits of man on man sex. Rather than divorce HIV/AIDS from the identity that it was pinned to when still known as GRID, "MSM" as it is used has just created a new identity to pin it to. But it is an identity that NO ONE claims, not even those homophobic cocksuckers and butt fuckers who are not gay, nor are they Bisexual. They eschew such labels and demean those of us who are not afraid to embrace a gay identity and a gay community. But the term "MSM" persists because those who respond to studies that use it are more interesting to researchers because they because they serve as gatekeepers between the gay & straight communities, spreading the virus to the more populous & powerful heterosexual majority.

    • Josh Kruger

      January 26, 2013 at 2:12 am

      REALLY provocative and interesting point!

    • David Phillips

      January 26, 2013 at 2:39 am

      I'll go further. "Men having sex with men" was originally language used to described the route of acquiring HIV for an infected person; and at some time in the early 90s it was contorted into "men who have sex with men" as a demographic label. Gay men don't hear themselves counted under "MSM," and neither do other men who screw other men because they call themselves 'str8'. That was around the time that "HIV/AIDS," as if the two were synonymous, became widely used AND American policy makers began to reckon that the domestic plague might explode among heterosexuals here as it had in Africa over almost a century before (PLEASE, let's stop telling the story of HIV with the first CDC MMWR case reports as its nexus). As a result, HIV resources shifted to address the rising epidemic among American heterosexuals leaving even more adversely affected Queers behind. HIV organizations actively participated in this alignment of resources by pursuing such funding streams, even as the proportion of new infections attributable to homosex hardly budged.

    • Ted Faigle

      January 26, 2013 at 2:50 am

      exactly. It's a sordid history controlled & directed by the CDC & NIH funding streams that have forced us to put up with contortions of our identities in order to have our issues taken at all seriously. It's much worse for trans people who have to bow down to these prescribed categories that contradict their deepest feelings of identity in order to fit into the boxes where money may be eeked out to address all our specific physical, medical, mental & emotional needs.

  4. Ted Faigle

    January 25, 2013 at 9:31 pm

    There will be no striking of middle ground between conservative ideas and whatever you think is the opposite if sanctimonious conservative advocates like yourself continue to accuse the rest of us of “HATRED” toward your tired old ideas. Gay men are very much engaged in active roles in our society including volunteer movements, careers, ART! And we DO form long-term monogamous relationships – often lasting much longer than our straight, married counterparts. You are deluding yourself to think that marriage is the panacea for what comes from casual sex, including HIV/AIDS. Monogamy is not an exclusive straight thing – In fact just look at the divorce rate among heterosexuals, very often due to infidelity, to see what a lie it is that heteros are monogamous and we should emulate them. To put it crudely, we ARE worth more than our assholes – you just need to pull your head out of yours to really see what that really means!

  5. John-Manuel Andriote

    January 26, 2013 at 1:13 am

    Dave Purdy is spot on about the disconnect between the LGBT organizations–which owe their growth and prominence to the AIDS epidemic that brought so many gay men out of the closet, and so much money to the Human Rights Campaign and NGLTF.

    But as early as the 80s, as soon as they realized that “women and kids” played better in Washington, the LGBT groups began to “hand off” HIV/AIDS to the HIV/AIDS-focused lobbying groups. Even though those groups’ lobbyists were mainly gay and lesbian, their main interest was not gay/bi men.

    Today, as I have written about in my book VICTORY DEFERRED and in my own article in the Gay & Lesbian Review (“Reclaiming HIV as a ‘Gay’ Disease”, here: http://www.glreview.com/article.php?articleid=1449), HRC and NGLTF pay lip service to HIV/AIDS, but even a casual glance at NGLTF’s “Creating Change” conference program, and HRC’s federal priorities, shows that HIV/AIDS ranks far down their list of priorities.

    You have to look at who puts their money where their mouths are–and these two groups talk a lot about HIV/AIDS but have not been powerful voices for years. They are far more focused on same-sex marriage and, some might say, the effort to achieve suburban respectability.

    Meanwhile, young gay males–particularly African-American and Latino–are getting infected with HIV at astonishing rates. You don’t hear NGLTF or HRC calling for realistic, proportional prevention funding to target these young men, do you? You don’t hear them demanding an end of the pernicious 1987 “Helms Amendment” that tied federal prevention funding into knots by banning funding for programming that actually discusses sex–or tells young gay men how to protect themselves.

    If anyone ever wanted to see what racism and classism in gay America look like, just look at the funding priorities of HRC and NGLTF. You might conclude they talk a good game, but they aren’t walking the walk of justice where it comes to our own people–maybe because they are too young or poor or have the right skin tone–to matter to these organizations, really.

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Commentary

Should we vacation in homophobic countries?

Secret gay bar in St. Petersburg seemed unfathomable

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(Image by Askonsat Uanthoeng via Pexels)

ST. PETERSBURG, Russia — The tiny rainbow light projecting onto the corner baseboard of the bar and tipsy people constantly belting out Mariah Carey karaoke songs clued me in. There was something unique happening here. It wasn’t until a gentleman with glittered cheeks approached me to say how fabulous my dress was that I suddenly clocked it. I’d unknowingly ended up in a gay bar in the middle of Saint Petersburg, Russia.

A flood of overwhelming joy first took over. Before coming to Russia on vacation, I knew all too well the discrimination and fear LGBTQ Russians lived in. A gay bar in Russia, even a secret one like this, seemed unfathomable, so being where people could unapologetically be out and proud — even if it was only in the compounds of these four walls — was emotionally profound.

But within seconds, dread took over. Were we all safe? If you didn’t know what to look out for, you’d assume this was just like every other neighboring non-gay bar — it wasn’t hidden or anything. I wondered what was stopping a homophobe, if they found out, from vandalizing the bar or doing something much worse.

After all, Russia approved a legislation in 2013 prohibiting the distribution of information about LGBTQ matters and relationships to minors. The legislation, known as the “gay propaganda law,” specifies that any act or event that authorities believe promotes homosexuality to individuals under the age of 18 is a punishable felony. According to a 2018 report by the international rights organization Human Rights Watch, anti-LGBTQ violence in the country spiked after it passed. The bill perpetuates the state’s discriminatory ideology that LGBTQ individuals are a “danger” to traditional Russian family values.

A recent poll indicated that roughly one-fifth of Russians want to “eliminate” gay and lesbian individuals from society. In a poll conducted by the Russian LGBT Network — a Russian queer advocacy group — 56 percent of LGBTQ respondents said they had been subjected to psychological abuse, and disturbing reports of state-sanctioned detention and torture of gay and bisexual men in Chechnya, a semi-autonomous Russian region, have surfaced in recent years.

Considering this, it was no surprise that most of my gay friends refused to come on vacation with me to Russia. In our everyday, gay people don’t march around with a gay Pride flag so homophobic Russians would probably never be able to tell which tourists are gay. However, many LGBTQ people will never travel to Russia or any other homophobic country for one logical reason: Fear.

Unfortunately, many exotic locations abroad are dangerous territory for the LGBTQ community to be in. Physical safety isn’t guaranteed in countries like Nigeria, Iran, Brunei and Saudi Arabia where same-sex relationships are punishable by the death penalty. Not to mention the numerous transgender people who’ve been detained and refused entry to similar countries — even when it’s only been a layover! However, an alternative reason why someone may refuse to vacation in a homophobic country is having a conscience.

When you pay for accommodation, nights out and sightseeing tours, your money doesn’t just reach the hotel staff and waiters pockets — you’re also financially supporting that country’s government. Money talks so not giving homophobic countries tourism puts pressure on them. Ethically, why would anybody ever want to support a country through tourism that treats their LGBTQ community like dirt? Homophobia shouldn’t be shrugged off simply as a local “culture.”

Other LGBTQ people firmly embrace the right to go anywhere they choose, and that choosing to go gives them power. Homophobic countries still have closeted LGBTQ folks living there running underground gay spaces and groups. Is turning our back on the wonderful people and beautiful culture of a new place turning our back on their gay community too? There are countries where gay marriage is legal and trans rights are progressive, but abortion laws remain backwards. Do we boycott these countries too? And, how do we collectively define what a homophobic country is? Is legalizing gay marriage a requisite? Gay marriage is still illegal in Thailand when it is one of the most gay and trans-friendly countries in the world.

Increasingly the line of what is “right” and “wrong” erases all grey areas. Morality and activism — particularly when politics is involved — is never straightforward. The biggest surprise about Russia was how my own stereotypes I’d picked up from the media weren’t always true. Saint Petersburg in Russia is far more liberal and gay-friendly compared to rural Russia but the fact still stands that my bisexual friend and I actively chose to go to a homophobic country for pleasure. In an ideal world, anybody of any sexual orientation or gender identity would be able to vacation wherever they want but that’s sadly not reality. In the meantime, the wanderlust LGBTQ community will go on gay cruises that guarantee safe refuge or put civil rights and ideological differences aside to experience the world’s natural wonders and incredible cultures.

Ash Potter is a writer and radio host.

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FDA approves injectable PrEP to reduce the risk of sexual HIV infection

Manufactured as Apretude, it will be available to at-risk adults & adolescents who weigh at least 77 pounds & have tested negative for HIV

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FDA headquarters, Silver Spring, MD (Photo Credit: U.S. government/FDA)

SILVER SPRING, Md. – The U.S. Food and Drug Administration announced Monday that the agency had approved the first injectable treatment for pre-exposure prophylaxis (PrEP) to reduce the risk of sexually acquired HIV.

Manufactured under the name Apretude, it will be available to at-risk adults and adolescents who weigh at least 77 pounds and have tested negative for HIV immediately beforehand the agency said in a press release.

By granting its approval, the FDA opens up the option for patients to receive the injectable drug instead of a daily HIV prevention oral medication, such as Truvada.

“Today’s approval adds an important tool in the effort to end the HIV epidemic by providing the first option to prevent HIV that does not involve taking a daily pill,” said Debra Birnkrant, M.D., director of the Division of Antivirals in the FDA’s Center for Drug Evaluation and Research. “This injection, given every two months, will be critical to addressing the HIV epidemic in the U.S., including helping high-risk individuals and certain groups where adherence to daily medication has been a major challenge or not a realistic option.”

According to the U.S. Centers for Disease Control and Prevention, notable gains have been made in increasing PrEP use for HIV prevention in the U.S. and preliminary data show that in 2020, about 25% of the 1.2 million people for whom PrEP is recommended were prescribed it, compared to only about 3% in 2015.

However, there remains significant room for improvement. PrEP requires high levels of adherence to be effective and certain high-risk individuals and groups, such as young men who have sex with men, are less likely to adhere to daily medication.

Other interpersonal factors, such as substance use disorders, depression, poverty and efforts to conceal medication also can impact adherence. It is hoped that the availability of a long-acting injectable PrEP option will increase PrEP uptake and adherence in these groups.

The safety and efficacy of Apretude to reduce the risk of acquiring HIV were evaluated in two randomized, double-blind trials that compared Apretude to Truvada, a once daily oral medication for HIV PrEP.

Trial 1 included HIV-uninfected men and transgender women who have sex with men and have high-risk behavior for HIV infection. Trial 2 included uninfected cisgender women at risk of acquiring HIV.

Participants who took Apretude started the trial with cabotegravir (oral, 30 mg tablet) and a placebo daily for up to five weeks, followed by Apretude 600mg injection at months one and two, then every two months thereafter and a daily placebo tablet.

Participants who took Truvada started the trial taking oral Truvada and placebo daily for up to five weeks, followed by oral Truvada daily and placebo intramuscular injection at months one and two and every two months thereafter.

In Trial 2, 3,224 cisgender women received either Apretude or Truvada. The trial measured the rate of HIV infections in participants who took oral cabotegravir and injections of Apretude compared to those who took Truvada orally.

The trial showed participants who took Apretude had 90% less risk of getting infected with HIV when compared to participants who took Truvada.

Apretude includes a boxed warning to not use the drug unless a negative HIV test is confirmed. It must only be prescribed to individuals confirmed to be HIV-negative immediately prior to starting the drug and before each injection to reduce the risk of developing drug resistance.

Drug-resistant HIV variants have been identified in people with undiagnosed HIV when they use Apretude for HIV PrEeP. Individuals who become infected with HIV while receiving Apretude for PrEP must transition to a complete HIV treatment regimen.

The drug labeling also includes warnings and precautions regarding hypersensitivity reactions, hepatotoxicity (liver damage) and depressive disorders.

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FDA slow in responding to calls for end to ban on MSM tissue donors

‘Scientific evidence does not support these restrictions’

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Tammy Baldwin, gay news, Washington Blade
Sen. Tammy Baldwin (D-Wis.) is a lead signer of the letter to the FDA. (Washington Blade photo by Michael Key)

As of early this week, the U.S. Food and Drug Administration had yet to respond to a Nov. 29 joint letter by 52 members of the U.S. House and U.S. Senate calling on the FDA to end its policy of restricting the donation of human tissues such as corneas, heart valves, skin, and other tissue by men who have sex with men, or MSM.

The letter is addressed to Acting FDA Commissioner Janet Woodcock and Department of Health and Human Services Secretary Xavier Becerra. The FDA is an agency within the HHS.

The letter says the FDA’s restrictions on MSM tissue donation date back to a 1994 U.S. Public Health Service “guidance” related to the possible transmission of HIV, which stated that any man “who has had sex with another man in the preceding five years” should be disqualified from tissue donation.

“We also call your attention to the broad consensus within the medical community indicating that the current scientific evidence does not support these restrictions,” the letter states. “We have welcomed the FDA’s recent steps in the right direction to address its discriminatory MSM blood donation policies and urge you to take similar actions to revise the agency’s tissue donation criteria to align with current science so as not to unfairly stigmatize gay and bisexual men.”

The letter adds, “In fact, a recent study in the medical journal JAMA Ophthalmology estimated that between 1,558 and 3,217 corneal donations are turned away annually from otherwise eligible donors who are disqualified because of their sexual orientation, an unacceptable figure given widespread shortages of transplantable corneas.”

The letter continues, saying, “FDA policy should be derived from the best available science, not historic bias and prejudice. As with blood donation, we believe that any deferral policies should be based on individualized risk assessment rather than a categorical, time-based deferral that perpetuates stigma.”

U.S. Sen. Tammy Baldwin (D-Wisc.), the nation’s only out lesbian U.S. senator, and U.S. Rep. Joe Neguse (D-Colo.) are the two lead signers of the letter. All 52 signers of the letter are Democrats.

Among the others who signed their names to the FDA letter are four of the nine openly gay or lesbian members of the U.S. House. They include Reps. David Cicilline (D-R.I.), Richie Torres (D-N.Y.), Mondaire Jones (D-N.Y.), and Mark Takano (D-Calif.). 

Also signing the letter are D.C. Congressional Del. Eleanor Holmes Norton (D-D.C.), and Rep. Jamie Raskin (D-Md.). 

In response to a Dec. 21 email inquiry from the Washington Blade, FDA Press Officer Abigail Capobianco sent the Blade a one-sentence statement saying, “The FDA will respond to the letter directly.”

The statement didn’t say to whom the FDA would respond or when it would issue its response.

https://neguse.house.gov/imo/media/doc/FINAL%20-%20Letter%20to%20FDA%20and%20HHS%20on%20Corneal%20Tissue%20Donations.pdf

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