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Posts Tagged ‘culture’

When People with HIV Became Suicide Bombers

Wednesday, April 2nd, 2014

Maybe we should blame the criminal prosecutions of people with HIV on the mythical legend of Gaetan Dugas, also known by his slanderous nickname, Patient Zero. Dugas was a gay flight attendant from Canada who, according to Randy Shilts’ 1987 book And the Band Played On, was among the first people with HIV in the United States.

Gaetan Dugas picAs the story goes, energetic Dugas (right) spent lots of time in the very early 1980′s getting laid in practically every city with an airport, even after learning he had the mysterious new “gay cancer.” He wanted to go out with a bang, the book claimed, and he didn’t particularly care who he might infect in the process. The book repeated rumors that after sex with bath house tricks Dugas would point out his skin lesions and then announce, “now you have it.”

Except the story isn’t true. Two years ago, Shilts’ former editor admitted the book needed a “literary device” and had encouraged Shilts to create the epidemic’s first “AIDS monster.” The scandalous sex life of Gaetan Dugas fit the bill nicely. Dugas died in 1984, never having the opportunity to answer his accusers regarding his alleged behaviors.

Instead of placing responsibility with everyone having sex, the book painted people with HIV as suicide bombers. The damage, to the truth and to the public image of people with AIDS, still reverberates today.

Laws exist in more than 30 States that criminalize people with HIV for not disclosing their status to sexual partners. Even where there are no HIV-specific laws, charges range from assault to attempted murder to bioterrorism. It should be noted that the vast majority of prosecutions do not involve the transmission of HIV. Often, the person charged used a condom, had an undetectable viral load, or engaged in sexual behavior that could not have infected their partner.

Anyone with HIV and a pissed off ex-lover should feel worried, since these cases often become a matter of whom you believe. Prosecutors and unfriendly juries are often shocked that people with HIV are having sex at all. They couldn’t care less about condoms or undetectable viral loads. They just want people who don’t disclose their status to face serious charges.

A lot of people see this as righteous and are taking the bait. Many of us know someone infected by a sex partner who lied about their status, and we want that jerk to pay for it. This sense of vengeance plays into the hands of a conservative legal system that is more than happy to send some diseased fags to jail. For a really long time. Regardless of the actual harm inflicted.

This issue is a real mine field of emotion, justice, science, and payback. Fortunately, an upcoming event will bring together advocates, legal experts and people living with HIV to discuss criminalization and map out a strategy to address it.

HIVisNotACrimeART“HIV is Not a Crime” is the first national conference on HIV criminalization.  It will be held on June 2-5, 2014, in Grinnell, Iowa.  Yes, Iowa. Some of the most effective activism around this issue is happening there, where State legislators are actually re-thinking their own laws and health policies as a result of smart advocacy and education. I urge you to alert your local HIV advocates about this important event.

Regardless of your views on criminalization, we can all agree that anyone who intentionally seeks to harm another person should be held accountable for it. That’s why we have laws against hurting other people.

But why are there laws on the books specific to HIV non-disclosure? HIV has its very own laws ordering people to disclose if they have it. The same cannot be said for other infectious viruses such as Human Papillomavirus (HPV) or Hepatitis C, which actually kill more people each year. The reason, in the mind of many advocates, is because those viral conditions are not as closely associated with gay sexuality. Or race. Or the disenfranchised. I hope you’re getting the picture.

Criminalization is not limited to whether or not someone discloses, even if those scenarios capture our imagination the most. Laws have other ways to punish those with HIV. 

Charges for an unrelated crime can be elevated if the defendant is HIV positive. Prostitution, or spitting at a cop, or punching somebody in the face in a bar, can carry more severe sentences based on the fact the accused is HIV positive.

In other words, defendants are guilty of living with HIV. That should give you real pause.

Surveys conducted by The SERO Project indicate that knowing about the risk of being charged with non-disclosure is an impediment to HIV testing. After witnessing how people with HIV are being treated by the judicial system, getting tested might feel like exposing yourself to potential prosecution.

These prosecutions do not rely upon the context of HIV disclosure, either. “The moral obligation to disclose increases with the degree of risk present,” said Sean Strub, founder of The SERO Project and one of the organizers of the Iowa conference, “but the context of the sexual encounter is also a factor.  In the context of a committed relationships, the disclosure obligation is much greater than in a sex club, for example.”

The key point here is morality. Disclosing your status is a moral issue, not a criminal one. Even in the worst years of AIDS, when the virus reliably killed you, we called our doctors to start treatment when we got infected. We didn’t call the cops. Blaming someone for our own risk behaviors seemed ludicrous. It still does.

You wouldn’t know it from news reports, which often feature race-driven cases of predatory men lurking around the countryside infecting the populous. Suicide bombers continue to titillate the media.

Look closely at the stories and you will find that “not disclosing” is usually equated with “intentionally infecting.” It’s as if sex of any kind on the part of someone with HIV is malicious. One side effect of HIV infection, it would seem, is a pathological bloodlust.

Never forget that these juicy legal stories represent the lives of real people. Sentences amounting to decades are being wielded. The convicted are having to register as sex offenders. In the often confusing landscape of sexual risk and negotiation, the person with HIV is facing grave consequences for decisions often made in the heat of the moment, or simply because they chose to protect their privacy when no risk to their partner existed.

HIV criminalization does nothing to reduce the impact of a new HIV infection.  It doubles it.

Mark

ALSO…

bars hands 2There’s a lot of great reporting and blogging about this issue right now, and here’s some of the best: Jake Sobo, the always intriguingly transparent blogger behind Promiscuous Gay Nerd, shares the frightening encounter a poz friend had when he visited his local health department and ended up accused of maliciously spreading HIV. HealthlineNews has posted an update on cases in Iowa that involve the very advocates doing such inspiring work there. The Gay and Lesbian Alliance Against Defamation (GLAAD) has made the gutsy choice to post an essay on the media’s role in perpetuating ignorance about criminalization (even though many of their usual media outlets refused to run it).  The most comprehensive piece on criminalization, though, could be “Sex, Lies, and HIV,” a ProPublica piece recently re-posted by HIVPlus Magazine that examines several of the most high-profile cases.

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Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »

Lessons Learned from Kissing a Straight Boy

Monday, March 24th, 2014

Last night I kissed a straight guy full on the lips. Then he tenderly put his arms around me and kissed me back. Tonight I’m going to do it again.

It sounds like conquest. Or breaking a taboo. At the very least it fulfills the fantasies of many a gay man.

And it makes me wonder why.

GayKissCartoonThe object of my affections is a man named Travis, and he plays my lover in a play we’re performing about a gay couple doomed by drug abuse.

Travis is most certainly straight, judging by the dorm room condition of his dressing area, his raunchy jokes and the effortless masculinity he possesses and that I can only approximate.

At an early rehearsal, long before any kissing would ensue, the director motioned me aside to share some surprising words.

“Let’s take our time working up to the kisses,” said the director. He lowered his voice a little. “Travis has never kissed a man. He’s straight.” It sounded like a condition.

And in a way, it was. It immediately colored how I acted around him, on stage and off. The play covers our courtship and as we rehearsed I felt another type of courtship happening. Was he watching me, thinking “that’s the guy I have to kiss?” Was I masculine enough? Did he think I was cute? Did he even care if I was attractive or not? Was he disgusted at the thought of touching me?

Obviously he was comfortable enough to take the role. But to be honest, he was nervous and it showed. I finally got the nerve to say something about it during a break.

“So Travis,” I began. “You’re straight and you’ve never kissed a guy I hear.”

“Yeah, yeah,” he said. “Sorry about that.” He was actually apologizing for being straight, and I felt like doing the same thing for being gay. “I guess it’s an issue for me but I’ll get more comfortable. I did a nude scene with a gay guy before, but I wasn’t playing gay and we didn’t kiss or anything.”

This man was on stage naked and found it easier than kissing a guy? I would French kiss the entire cast and crew of “Ugly Betty” before you would find me dangling uncovered on stage.

Bringing it up helped immensely. We not only joked about his “condition,” but we also discussed mine: HIV. It allowed me to engage in some basic HIV prevention education with someone who might not otherwise get candid answers to his concerns. Yes, he knew you couldn’t get it from kissing, but hearing it definitively made him more at ease.

We made a deal that we would start kissing when we no longer needed to hold scripts, and when that time came, I didn’t hesitate. And bless him, neither did he.

It was a brief, perfectly ordinary kiss. And it was done.

Once the occasion had passed I think we both realized it was much ado about nothing. But it got me thinking about why the fact he is straight made the idea of kissing him somehow more exciting. Why? It may be as simple as wanting what you can not have. And that’s a common desire.

It’s the other implications that bother me. Do I see a straight man as innately more appealing than myself? As “better,” as a more authentic specimen of Man? That would suggest I think of myself as less than ideal because of my sexuality.

Whatever the reasons, it’s not the only preconceived ideas I had about my straight co-star. I questioned if he could pull off the gay thing. Or would something, like his macho pride or his clueless heterosexuality, prevent his performance from being “authentic?”

But something happens every performance that surprises me and shames my prejudices. This lumbering straight dude who bristles when I call him “sweetheart” offstage becomes a giving, affectionate lover onstage. His eyes smile at me. He pulls me closer in our bedroom scene. He shows a sensitive, willing and playful vulnerability.

It has been an enlightening experience. I now realize how little faith I had in his talent, much less his humanity. I’m not alone. Half the cast is gay, and almost all of us play multiple roles in various sexual combinations. Between our sincere desire to understand our characters and getting to know each other, the backstage chatter runs somewhere between Dr. Phil and Jerry Springer.

We’ve all learned a lot. I learned that if something got in the way of portraying a gay couple on stage, it wasn’t the straight man’s phobias.

It was mine.

Mark

This piece originally appeared on my blog in October of 2011, but now I am ready to unmask my straight co-star! He is none other than the talented Travis Young, who has gone on to an exciting career as a television actor (he’s a regular on the new Resurrection). You can check out his Facebook page here. As for me, well, I’m still gay. — Mark

PLUS…

HIVisNotACrimeARTIt remains the defining HIV issue of our time: HIV criminalization, or people with HIV being arrested and prosecuted for not disclosing their status to sex partners, for instance. This is a very real thing, folks. Rather than an actual public health service, prosecutions seemed to be based on a belief that people with HIV shouldn’t be having sex at all, and they usually ignore the actual risks involved (judges and juries don’t seem to care if condoms were used, or even if anyone was infected or not). Some of the most exciting advocacy around this issue is being led by advocates in Iowa (yes, Iowa), so it’s fitting that the first national “HIV is Not a Crime” conference on criminalization will take place there. I urge you to look into this issue, and the best place to start would be the web site for The Sero Project.

Grindr picMy occasional health-related items for the pop culture site Queerty (possibly the most trafficked site for younger gay men) have been fun and challenging. Mostly, I’m intimidated writing in a “young, snappy” style that might appeal to their audience, especially since I’d rather just go lie down. So far my pieces have included explaining the new “undetectable” study; the role of meth and the health of people with HIV; and how at least one health department is joining the cruisers on Grindr. I’m really grateful for the opportunity to reach this audience and will keep on trying not to let my age show.

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Posted in Anita Mann and Acting Gigs, Books and Writings, Gay Life, My Fabulous Disease, News | 1 Comment »

What Donna Summer Still Means to Gay Men

Tuesday, February 25th, 2014

The music my friends liked when I was a teenager intimidated me. It was the head-banging rock of the early seventies, and it felt alien and unappetizing. Most of all, it just felt… straight, in a way I knew I could never be. Alone in my room, I listened to my beloved Broadway musicals, and resigned myself to the fact that popular music would never really speak to me.

And then in 1977, when I was sixteen years old, I began sneaking into the only gay bar in Shreveport, Louisiana. Inside I found joy and liberty, fashioned with bell bottomed pants and handsome smiles and the dance floor – oh my God the dance floor – centering the nightclub was a glorious explosion of colored light and swinging hips and arms reaching up, up to the sky as if we could clutch it in our hands. The music was an entrancing bombardment of sound, and one song, one mesmerizing invitation to touch the heavens, was played again and again.

It was Donna Summer. And she was singing “I Feel Love.”

The track was really the triumph of producer Giorgio Moroder, who created the driving, synthesized beat that would define Donna Summer’s music for years to come. But I knew I had to own this amazing song, and soon I stood proudly at the record store cashier to buy my very first popular album, Donna Summer’s I Remember Yesterday.

I had found my music, my voice, and my lifelong muse.

The following year I had come out as a senior in high school, and Donna Summer was still in her “whisper period.” It was never my favorite sound from her – it felt like playing chopsticks on a grand piano – and I knew from her other album tracks that she could let it rip. As I was graduating she did just that, with the release of her iconic “Last Dance.” Her full-throttle pipes were on stunning display. Dance parties would never be the same.

By the time I left home for college in New Orleans, the music of Donna Summer had exploded into popular culture. I felt so proud of her, as if I had discovered her myself. My nights in the French Quarter were spent in the Parade disco on Bourbon Street, dancing to “Hot Stuff” and “Bad Girls.”

The feeling of joyous exuberance that surrounded that disco is hard to describe. It was a sea of shirtless men, staking claim to our sexuality and the promise of infinite possibilities ahead. The incessant thump! thump! thump! of the beat was our clarion call, and it shouted Here! Here! Your tribe is here! We were so beautiful, in ways we were much too young to know.

And then soon, of course, the lights began to dim.

By 1982, I was struggling in Los Angeles as an aspiring actor, and Donna Summer was having a musical identity crisis. Record executives wanted a new sound for her to accompany the changing times, and her longtime producer Giorgio Moroder had been replaced by a succession of others. The red-hot Quincy Jones produced her Donna Summer album that year and their studio clashes became legendary. The album floundered and produced no significant hits.

At the Los Angeles gay pride festival the next year, I was thrilled to hear Donna’s voice again, sounding gorgeous and almighty, singing “She Works Hard for the Money.” I took to the dance floor but was somehow unable to muster the joy I had known only a few years before. Life had intervened. And it had brutal plans for the men under the dance floor tent.

Donna Summer produced dance floor singles, if not hits, in the years that followed, but we weren’t paying attention. The night club crowds dissipated, as a silent killer plucked men away one by one. AIDS had begun its murderous march through the gay community.

The villain wasn’t simply the disease in those darkest of days. It was ignorance, and the judgment that rose up from social conservatives who saw Godly retribution in the horrific deaths of our friends. And so, when Donna Summer became a born-again Christian during this period and announced she would no longer perform her early, erotically charged hit “Love to Love You, Baby,” her gay audience viewed her with immediate suspicion.

An ugly rumor began. Someone claimed to have heard her make a homophobic remark during a concert appearance. Depending on who was repeating the story, she had either said AIDS was God’s judgment, or that God made Adam and Eve, not Adam and Steve. The unsubstantiated rumor swirled and grew, in an environment in which gay men were particularly sensitive to ignorance and hatred. By the time Donna Summer took it all seriously enough to set the record straight, it was too late. What was left of her popularity fell victim to the social maelstrom of AIDS.

I never believed the story, and defiantly continued buying her albums, though they appeared with less regularity. Donna Summer would have only one more true hit, “This Time I Know It’s for Real,” which I chose to perform for my maiden appearance in drag at an AIDS benefit. The fact that during this time Donna Summer was raising money for AIDS research gained little traction among emotionally bruised and unforgiving gay men.

Today, disco may be dead, but Donna Summer’s music laid the groundwork for everyone from Madonna to Lady GaGa, even if my body has found it harder to approximate the dance floor moves of my youth. But in my mind, as I blast “Dim All the Lights” in the privacy of my living room, I am young and powerful and life is making promises that are wonderful and possible.

Donna Summer is among the spirits now, joining the legions of ghosts haunting brightly colored discos from another era. She is still cooing to them, to these throngs of boisterous men, inviting them to the dance, where there is everything to celebrate and nothing to forgive.

The men are moving to the beat and laughing and holding one another. They are all beautiful, and they know it.

And they feel love.

Mark

(This originally appeared on this blog in May of 2012, shortly after her death. I continue to play Donna’s music, or at least hear it playing in my memories, every single day.)

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease | 7 Comments »

The Sound and Fury of the PrEP Debate (and the Facts to Win It)

Monday, January 27th, 2014

“We don’t know the side effects of this drug. It’s too expensive. Insurance won’t cover it. It hasn’t been studied enough. It will encourage slutty behavior. And why the hell don’t people just use condoms?”  

– Objections raised to the oral contraceptive progesterone (“The Pill”), approved by the FDA      54 years ago.

When the drug Truvada achieved FDA approval in July of 2012 as a medication to prevent HIV infection among people who are negative (a strategy known as pre-exposure prophylaxis, or PrEP), it’s as if the ghosts of naysayers from the 1960′s rose from their resting places, delighted and re-energized, and began drilling their mid-century objections into the hearts and minds of contemporary society.

Condom in a jeens' pocket and crossed fengersMaybe proponents of PrEP like myself believed the response to the drug would be more enthusiastic. Surely anyone who lived through the horror of early AIDS would thank God that a new prevention strategy exists that doesn’t rely upon condoms alone. The fury of the response has been a little startling to me.

Fortunately, Facebook groups and online sites that explain the facts about PrEP are springing up everywhere to address misinformation and to clarify legitimate areas of concern. Here are the most persistent objections to PrEP, and the facts as we know them.

People wouldn’t need PrEP if they would use condoms. They just want to bareback. Studies show that people on PrEP do not have an increase in high risk sexual behavior, but cynics have visions of wanton orgies ahead worthy of vintage gay porn. Alas, what others do in their sex lives is out of our control, whether that drives people up the wall or not.

The facts are these: more than half of gay men do not use condoms or do not use them consistently. This fact has remained true throughout the 30 years condom use has been measured among gay men, including during the darkest years of the AIDS crisis. We can address 50,000 new infections a year or we can have a useless moral debate.

The lack of condom use is what makes PrEP so exciting as a prevention method. The very first large study of Prep was the iPrEX Study, an international study of 2,500 people that was comprised mostly of gay men and some transgender women. The study showed that people who use Truvada as PrEP correctly (taking a pill every day) can have their risk reduced by 90% or more, depending on adherence. Some models show an efficacy rate of up to 99% based on near-perfect adherence.

PrEP is also not dependent on last minute decisions in the heat of passion. Taking a pill in the morning is calmly detached from having sex that night.

PrEP is not necessarily an either/or proposition, because lots of people taking PrEP are also using condoms. But let’s be real. Most people seeking out PrEP already don’t use condoms or they don’t want to use them anymore. Since they are trading one prevention device for something that has a better success rate and is easier to use, what’s it to you?

We don’t know the side effects of TruvadaWe have years of data of Truvada side effects on people with HIV (it’s been FDA approved to treat HIV since 2004). Truvada was selected for clinical trials as a PrEP drug because of its favorable safety profile.

It is true that there are some reports of bone density and kidney problems among people with HIV using Truvada as part of their treatment regimen. These side effects have sometimes been serious. We can’t assume the experience of HIV negative people will be the same, and that’s why Truvada patients, positive and negative, should be routinely tested for bone density and kidney function.

More and more HIV negative writers and bloggers (and even a gay porn star) are sharing their experiences on PrEP but, thus far, side effects haven’t been part of their story. Watching them share their progress publicly over time should be quite interesting.

PillUnderstanding side effects is part of the assumed risk we take with medications, as any television commercial for a pharmaceutical drug will attest. If you don’t want to cough up blood, for instance, or have bloody stools or nausea or a ringing in your ears, don’t take aspirin. Those side effects are uncommon, and so are the side effects for Truvada.

People taking PrEP also have the option of discontinuing Truvada depending on life events and necessity. Maybe you stop dating the HIV positive guy, or take a break from casual sex, or return to condoms for a while. Starting and stopping the drug in this way does not lead to resistance as long as a medical professional verifies you are HIV negative before restarting.

If you are wary of Truvada side effects, don’t use it. And allow others to make that same determination for themselves.

PrEP is too expensive and insurance won’t cover it. This argument is losing steam rapidly. The Affordable Care Act in the United States is underway and by all accounts every insurance company as well as Medicaid is covering Truvada — although it may require pre-authorization from a doctor for use as PrEP (the CDC has produced a handy document available online to help explain PrEP  to your physician).

For those without insurance or money for a co-pay, Gilead (the maker of Truvada) has a patient assistance program that can provide the drug outright or supply co-pay cards worth up to $200 per month. Even if none of this were true, the potential benefits of a drug should not be assessed solely by its price tag.

The people who need it most can’t access it anyway so what’s the point? It’s a good thing we don’t have this attitude towards condoms. Access isn’t the same as efficacy.

But it is certainly true that young gay black men, whom the epidemic is affecting in shocking numbers, have less access to healthcare. This is a systemic problem and it is unfair, frankly, to expect PrEP to solve it. It is also true that PrEP can be an occasion for HIV negative people to seek care, and once on PrEP they are typically required to have medical follow-ups throughout the year, which offers obvious benefits.

The biggest hurdle is often physicians themselves. HIV negative people may have a doctor unfamiliar with HIV care, much less PrEP, and those doctors are often intimidated by what they see as the complexities of HIV treatment. Until more professional education is done, potential PrEP users must learn to advocate for themselves and share CDC recommendations with their doctor.

People won’t adhere to PrEP and that will create resistant strains. It is true that in some early PrEP trials adherence was a problem. Real life behaviors, though, differ from clinical trials in some important ways.

Trial participants have no idea if they are taking the actual drug or not, and in trials the efficacy of the drug hasn’t even been proven. So, the commitment of trial participants to stay adherent to the drug is less rigorous than users today, who know that the drug works, know they’re getting the real thing, and are invested in remaining HIV negative. People taking PrEP today have more skin in the game, as it were.

For those who do miss the occasional dose, Truvada is somewhat forgiving. The protective ability of the drug doesn’t drop if you miss a single dose because Truvada remains in the blood for up to 72 hours (compare that to missing a condom occasionally, which CDC statistics show to be as risky as never using them at all). That being said, it is optimal and recommended that Truvada be taken consistently each day, and users should take seven daily doses for Truvada to achieve optimal protection.

Taking Truvada alone when a PrEP user doesn’t know they are already positive can lead to resistance and significantly reduce treatment options. Resistance has not been found with individuals who were verified HIV negative at the time they started Truvada, but it has happened in people who became HIV positive due to low adherence.

PrEP is just putting money into the pockets of pharmaceuticals when we have cheaper solutions.  I can’t imagine anyone telling HIV positive people not to take their medications because their drugs are making profits for Big Pharma. The argument that HIV negative people aren’t worth a fraction of that investment astounds me. I suppose we should wait until negative people get infected before it’s okay for them make a profit for the drug companies.

And those are the facts as we know them about PrEP. I have no delusions that the debate will calm any time soon, of course. Human nature is far too predictable for that.

Just recently, politician Mike Huckabee addressed a gathering of fellow Republicans. Part of his remarks, delivered half a century after The Pill was approved for contraception, was his belief that “smart” women don’t need the government “providing them a prescription each month for birth control because they cannot control their libido.”

Right. Because birth control, as critics have been saying since 1960, would be unnecessary if women only showed some restraint and didn’t behave like barebacking sluts.

Everything old is new again.

Mark

My thanks to HIV advocate Jim Pickett of AIDS Foundation Chicago for his expertise on this issue. Jim is active in the development of rectal microbicides (lubes and douches that kill HIV on contact). Damon L. Jacobs, who writes about his personal experience taking PrEP, also served as a resource.

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Posted in Gay Life, My Fabulous Disease, News, Prevention and Policy | 19 Comments »

Designing and Disclosing on Project Runway

Sunday, January 19th, 2014

If you’re considering how to best disclose your HIV positive status to everyone you know, here’s one suggestion: learn to sew. Television’s long-running reality hit Project Runway could be holding a spot just for you.

Jack MackenrothOver the course of a dozen seasons, the fashion competition series has tackled everything from drug addiction to racism to gender reassignment among contestants, and it has hosted more HIV disclosures than any other reality show. The latest addition to the trend is designer Viktor Luna, the contestant who sported the fluttering handheld fan on this year’s Project Runway: All Stars.

Exactly how these disclosures have come about over the years is a study in contrasts, as different as the three HIV positive contestants themselves – and the whims of show producers.

In 1998, season four of Project Runway introduced the world to designer Jack Mackenroth (pictured right), the competitive swimmer, model, and all-around sex symbol who had already been living openly with HIV for 17 years. His casual disclosure during an early direct camera interview during his season showed a man comfortable with himself and his status.

“The producers knew I was positive because we fill out a stack of background information,” Mackenroth told HIV Plus. “They had my entire medical history, like every other contestant on the show.”

Already an HIV advocate at the time, Mackenroth knew the producers would eventually use his HIV as a dramatic device, but “that was fine with me,” he said, “because I saw it as an important tool as well, for HIV visibility and as a chance to fight stigma.”

That opportunity was lost when fate intervened. Before he could disclose to his fellow contestants on camera, Mackenroth developed a serious infection unrelated to HIV that forced him to withdraw from the show five episodes into the season.

“Tim Gunn sat me down and reassured me,” said Mackenroth. “He told me that everything happens for a reason, and in that moment I was like, Yeah, right. I was exhausted and emotional. But the truth is, that show gave me my platform. It worked out great.”

It would be years later until an HIV positive contestant would actually disclose their status to the cast on camera, but when it finally happened it brought all the drama and emotion the famously controlling Project Runway producers could ever imagine.

MondoIn 2010, season eight of the series included Mondo Guerra (pictured left), an insanely talented young designer who was as guarded as he was endearing. Although one should be mindful that footage is carefully edited to create characters and increase drama, Guerra certainly seemed like an artist with a painful secret or two.

During a challenge to create an original textile, Guerra designed a graphic print with a conspicuous “plus” sign throughout it. In direct camera segments, he revealed that the design reflected his HIV-positive status but otherwise kept his inspiration to himself, having not disclosed to even his own family at that point.

When pressed on the runway later to explain his design, Guerra demurred again. The judges stared in wonder. The music swelled. Filled with nervous emotion, Mondo haltingly revealed his HIV status as the inspiration for his textile. Viewers saw not only his tears but something more: a humble sort of triumph.

“I feel free,” Guerra said plainly.

Guerra’s disclosure was given generous air time during the episode and was the dramatic centerpiece of the entire season. The moment has been replayed endlessly on YouTube and was shown to a packed ballroom at the 2013 United States Conference on AIDS. It was undeniably inspiring, seemingly spontaneous, and brilliant television.

“Knowing Mondo, I think that happened organically,” said Mackenroth. “Of course, everyone is working nonstop, producing a full season in 35 days. When these vulnerable situations come up, we hardly have time to think it through.”

“When the judges genuinely wanted to know the story behind my print and design, that felt like the right moment,” Guerra told HIV Plus. “So I told them what it really represented and that moment was a turning point in my life.”

If Mondo provided the pinnacle of televised disclosures, the current season of Project Runway: All Stars has given us the most curious presentation of The Big Reveal.

ViktorIn one episode, designer Viktor Luna (pictured right) and the cast were scampering about, hard at work, and suddenly Luna begins speaking of his great anxiety in voice-over. Something is weighing heavily on him. He takes two designer pals aside and quickly shares his HIV-positive status. His friends say supportive things, they hug, and then they all dash back to their sewing machines as if they’d just had a quick smoke break. Luna’s status is never mentioned again.

Luna’s disclosure, as edited, felt like an afterthought, as if the producers noticed a lull in the excitement and cued Luna to bring on the drama. Producers might have hoped for something touching, but the hurried editing actually minimized the complicated nature of HIV disclosure. Everything about it felt false.

You know we are living in a more fortunate time when the merits of one televised HIV disclosure over another are being argued.

“Regardless of how it’s produced, it’s all a win,” says Mackenroth. “Whenever this or any show combats stigma, the HIV community benefits from it.”

Guerra sees a personal benefit too.

“Personally, it wasn’t until I was open about my status that I started to take better care of myself,” Mondo told us. “For that reason, I applaud Jack’s openness about his status.”

Today, Mackenroth continues his advocacy as one of the creators of the HIV=Equal campaign. Guerra has entered the fashion design stratosphere and is a key player in the Project iDesign Campaign, which encourages doctor/patient partnership. Luna wrote about his HIV disclosure on Huffington Post, sharing the details of his HIV journey that were not included in his Project Runway: All Stars episode.

Nothing is assured, in fame or fashion. Project Runway contestants are often struggling designers who leave whatever jobs they have to compete on the show. For any of them to put their personal lives on the line, to take the sometimes frightening step of revealing their HIV status to the world, takes a special kind of courage.

Many people with HIV may not be fashion designers, but they can certainly relate to that.

Mark

(This is a slightly edited version of my essay that originally appeared on the site of HIV Plus Magazine. Jack Mackenroth photo by Stan Madden. Viktor Luna photographed at Mercedes Benz Fashion Week by Fernanda Calfat/Getty Images.)

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HIV Treatment Activist Nelson Vergel Faces Down Cancer

Thursday, January 9th, 2014

In the summer of 2013, thousands of subscribers to Nelson Vergel’s “PozHealth” listserv received a startling email from the HIV positive fitness and nutrition expert.

Nelson Bald“You are probably wondering why I have been so quiet the last few weeks…” the message began. Vergel, a trained chemical engineer who devoted himself to HIV treatment advocacy after testing positive in 1985, had a troubling explanation for his online absence. A diagnosis of cancer.

“It took me months to come out to the poz group,” Vergel said about revealing his diagnosis to his listerv. “It was a struggle for me.”

Vergel had begun the group in 1999 when lipodystrophy was a hot topic among people with HIV/AIDS and they needed a place to compare notes, and it has since become the largest treatment information listerv for people living with HIV. It still thrives at a time when the exchange of HIV treatment information among peers has waned.

The success of the group perfectly reflects the dedication of its host, a gay bodybuilder whose own serious struggle with AIDS over the years belies his appearance of physical strength. Group members clearly admire Vergel and see themselves in his medical challenges and triumphs.

So it was with some trepidation that Vergel revealed a new health crisis to the group, one that forced his HIV to the back burner. “I was very concerned that people might panic, not about me, but themselves. I didn’t want them to think this applied to them,” Vergel said. “I really was more concerned with them projecting my challenge onto themselves.”

He had little choice, however. His condition was serious.

In June, Vergel was experiencing stomach problems that doctors initially believed to be ulcers. Then came a diagnosis of H Pilori, a stomach bacteria. Vergel requested an upper GI endoscopy, during which ulcers were found and biopsied. While treatment with antibiotics killed the bacteria, the news from the biopsies was grave: Vergel had a aggressive brand of cancer known as non-Hodgkins lymphoma.

“I was shocked,” said Vergel. It wasn’t the feeling of impending death he had experienced when he tested HIV positive in 1985, but something more incredulous. “It hit me really hard. I had been preparing for heart attacks, or anal cancers, which I have checked every year. I was controlling those high risk situations. But this…?”

Despite the cruel irony of battling mightily against one disease and then facing another, it didn’t take long for Vergel’s instincts as a treatment advocate to take hold. “After I got the news, I got into my car and cried a little,” he said. “And then, before I called my partner, I got on the phone and did a Google search.”

Nelson ChemoHis research confirmed the treatment plan of chemotherapy that his doctor recommended, but he soon discovered that cancer healthcare isn’t nearly as accustomed to empowered, involved patients as is the world of HIV.

“I realized how behind oncology is from HIV,” Vergel said, “because there are fewer online resources for patients. It felt like early HIV. They don’t discuss side effects until they happen to you. I kept finding out things randomly. It made me realize how good we have it in HIV. In oncology all they care about is killing the cancer. But part of the goal should be protecting the patient from side effects.”

His treatment as a patient was often the antithesis of what he has advocated for HIV patients for decades. That advocacy, and Vergel’s influence in crafting programs to empower HIV patients, is considerable.

Vergel educated himself on HIV pathology and medications after his HIV diagnosis, and became involved in several national health commissions, leading to his founding of the Program for Wellness Restoration in 1994. Because of his interest in physical fitness, he pushed for federal funding for studies of anabolic steroids and promoted results of earlier studies that showed that once you reach 55% of lean body mass, your chances of survival drop precipitously.

He was convinced that resistance training, nutrition and supplements are a key weapon against HIV. His 1998 book, Built to Survive, found a place on the shelf of nearly every gay man who had HIV and a gym membership.

For better or worse, the image of muscled gay men with HIV that emerged in the 1990′s, pumped up from weight training and anabolic steroids, can be directly attributed to the seminal work of Nelson Vergel, who trumpeted the importance of lean body mass in fighting HIV infection and maintaining a healthy immune system.

Unfortunately, his own HIV has been multi-drug resistant, and Vergel is currently on the last available regimen to treat his disease. The clinical expression for patients like him is “treatment failure.” Vergel hates the term.

“Being called a failure sends the wrong message to patients,” he said. “and I have been trying to change that language in the treatment world. It’s demeaning to patients who are adherent.”

As his cancer treatment progressed, other differences between his two health crisis emerged.

“A good friend of mine was diagnosed with cancer the week before me. He said, ‘I have neighbors cooking for me. Doing my laundry. Isn’t it sad that I could never disclose my HIV, but I can disclose this and everyone rushes to help? This is a diagnosis that my community can get behind. Isn’t it sad that HIV isn’t the same way?’”

The good news is that, unlike Vergel’s history with HIV medication, the cancer treatment seems to have worked.

Nelson Wedding“There is no cancer based on my last biopsy,” Vergel said. True to form, Vergel made the decision himself to stop the rounds of chemo early because he was concerned with its effect on his immune system. But he remains vigilant. “You are never cured of cancer. Like HIV, you have to keep an eye on it.”

The last six months have been “the most intense of my life,” he said, but it has also included signs that life, and joy, can go on. Vergel and his longtime partner were married in Washington, DC, on September 21.

“Always enjoy the moment,” Vergel said. And then he adds an observation for those living with HIV. “Apply what you have learned in HIV and take control of your own health, no matter what the diagnosis. Oncologists are not used to seeing patients like us. Long time HIV survivors have many years of experience dealing with the healthcare environment, we have gathered lessons on second opinions, questioning our doctors, we’re relatively young and healthy and have learned a lot of skills.”

Today, Vergel is again busy posting to his POZHealth listserv, offering advice in TheBody.com’s “Ask the Experts” forum, and he just founded a new men’s health program, ExcelMale . Even the hair he lost during chemo is growing back.

“I didn’t know how resilient I was until I went through this,” Vergel says, and then there is a thoughtful pause. “Resilience. I like that word.”

Mark

Some of the most popular My Fabulous Disease videos have shown Nelson trying to whip me into shape. “Fitness Stud Nelson Vergel Raids My Fridge” is hilarious and informative, “Hitting the Gym with Fitness Expert Nelson Vergel” benefits from his tight tank top, and “The Hard Facts on Erectile Dysfunction” offers advice on, well, you know (and opens with us in bed together). Check them out!

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The Top Ten ‘Fabulous’ Posts of 2013

Monday, December 30th, 2013

The year 2013 was a game changer for My Fabulous Disease, and I want to thank you for your clicks, comments, and shares.  I have more confidence as an advocate and a writer, thanks to you, and traffic for this blog more than doubled over last year!

I’m bad at predicting which posts might resonate with readers. My philosophy has always been, “if you build it they will come,” and the rest is up to you. Apparently you have very eclectic tastes, my friends.

In ascending order, the Top Ten Postings of 2013 are…

Mondo Grab10. The Inspiring Advocates of the 2013 United States Conference on AIDS. This is a rollicking video recap of the annual event, produced by the National Minority AIDS Council, that brings together the very best our HIV/AIDS service community has to offer. Public health and pharma are there, of course, but I’m always thrilled to meet those who are doing the work on the ground, for local community-based organization working with scant budgets but tons of heart.  This video includes a discussion about the generational divide among people with HIV, interviews with multiple movers and shakers, marching bands, and Mardi Gras pageantry.

DickEmilKilaRESIZED9. An AIDS Death in the Family.  Drawing from my book, A Place Like This, I have revisited the night my brothers’ longtime partner died from AIDS, and the surreal haze that surrounded the occasion.  It is about loss, yes, but also about how we cling to social habits during the darkest of times to attempt to normalize things that feel anything but normal.  A dying man offering a “parting gift” to me, conversing as if he won’t be gone in a few days, and the dreadful phone calls that a grieving lover must undertake. Yes, it’s rough.  But it’s life… and death.

MichaelPride2013SignSMALL8. Two Minutes of Advice on Testing HIV Positive. This is a clever social media campaign: Healthline, an online health community, has asked people who have been living with HIV to create videos for those who have recently tested positive, known as “You’ve Got This.” Think of it as “It Gets Better” for those with HIV. Of course, I had to create a video in my own peculiar way — something that demonstrates the sense of humor that has served me well over the course of 30 years living with HIV. There are now quite a few videos in this campaign with a variety of messages, and I encourage you to visit the Healthline site; you might find the message you or someone you know really needs to hear.

butt7. Probing My Anal Phobia.  I cannot believe I told you these things, which might be one reason this essay is a personal favorite of mine. Maybe this is about facing your fears, because I hate talking about… anal things. So what did I write about? Anal sex, cleanliness, colonoscopies, and the most outrageous douching disaster I have ever experienced. Yes, that’s right, I went there. And the results will either have you laughing or finding out how to unsubscribe. Sometimes, I just need to write things that are on my mind and try to block out the fact that my Mom follows my blog. Enjoy!

Poodle16. The Increasingly Strange Case of Uncle Poodle. Long before the Duck Dynasty controversy blew up, another popular reality show had an off-camera moment that caused quite a stir. Uncle Poodle, the gay uncle from the reality show Here Comes Honey Boo Boo, came out in a printed interview as HIV positive, and further claimed that he had been infected by someone who did not disclose his status — and who went to jail as a result. The details, however, are murky, and say as much about shame and HIV stigma as they do about criminalization laws.

Mark and Bil5. HIV and Gay Media: The Vanishing Virus. I suppose I have a lot of nerve. After having the honor of being included in an invitation-only summit of LGBT media representatives, I spend much of my time at the event hounding them, on video, about why they don’t write about HIV more than they do. Fortunately, the participants were honest, thoughtful, and quite candid in their responses.  The event was co-sponsored by the National Lesbian and Gay Journalists Association and the video was featured on the main page of their site, so I suppose all is forgiven!

02262008 mugshot4. Surviving Two Epidemics: AIDS and Meth.  My history of crystal meth addiction and recovery isn’t something I am ashamed of, but I don’t write about it as much as I once did. The whole recovery process feels almost too precious to share. But when I was asked to share my story for an ongoing feature in Positive Frontiers about gay men in recovery, it just felt right. This essay is my truth, and maybe it will speak to someone at a time when they are ready to make a change. For information on crystal meth recovery, visit http://crystalmeth.org/.

Credit Anne Marie Fox Focus Features3. The Beautiful Sadness of Dallas Buyers Club. If anyone has a chance of stealing away an Oscar from Chiwetel Ejiofor of 12 Years a Slave this year, it is Matthew McConaughey, who is transcendent in this illuminating look at one straight man’s response to the lack of FDA approved HIV medications. Some have criticized the film for not showing the impact of gay activists, but that’s part of the point of the film: this is the story of this terribly damaged straight man, and how his prejudices were (somewhat) overcome through his own advocacy, as self serving as it may have been. You can count on one thing: Jared Leto, who played a transgendered friend, will be taking home an Oscar for Best Supporting Actor.

taregdy face grab 4 CROP BLOG SIZE2 (tie). Stop Bludgeoning Young Gay Men with Our AIDS Tragedy. I thought I could say these things that other folks — HIV negative or young gay men themselves — would be crucified for saying. I was wrong.  I got crucified, too. Fortunately for my sensitive ego (yes, angry comments still hurt my feelings), many others understood that our history is important and vital to preserve, but it’s not a prevention strategy for the landscape of today. This was more primal scream than writing for me.  Perhaps I should learn to count to ten?

Spencer Stairs crop2 (tie). The Private War That Killed Spencer Cox.  It’s kind of amazing to realize that Spencer, an early activist with ACT UP New York that went on to found Treatment Action Group, died only last December. So much has been written and done in his honor, including ongoing public forums on either coast that address PTSD among people with HIV/AIDS, and how we as a community can best address their (our) needs. This essay, posted soon after Spencer died, explores some of those issues, including trauma, loss, and addiction, all of which Spencer himself wrote about before his untimely death at the age of 44.

donna-reed11. Your Mother Liked It Bareback. I had the title before I wrote the piece, and that’s probably a terrible thing to admit, because the title alone incensed people (The Huffington Post, which carries my content regularly, refused to post it at all). Another primal scream put on paper, an outgrowth of complete frustration over our refusal to admit that there are other “protections” against HIV that do not include condoms. Despite applauding those who do use condoms more than once in the piece, I was accused of “promoting” barebacking and received my favorite name-calling moment of the year, as a “vile merchant of death.” Even when faced with the facts about undetectable viral loads, or PrEP, some who read this article fell back on 40-year-old worries: “you could get an STD!” Honey, if the worst we have to fear these days is the clap, then sign me up. That just makes me feel nostalgic.

POZ June 2013 Coverr blog sizeBut wait! The Real Winner of 2013: “The Sound of Stigma.” When POZ Magazine asked me to contribute a cover story on HIV stigma among gay men, I had no idea it would become my most widely read essay of the year, by far, without even appearing on my own site.  Even more surprising, to me, because the piece is such an indictment of how gay community turns against its own (“We are AIDS itself.”). The posting of the story on Poz.com has been shared 2,500 times and has more than 150 comments, ranging from emotional to angry to heartbreaking. I am proud and yes, humbled, that the article contributed to such an important conversation.

Have a bright, joyful, and healthy 2014, my friends.

Mark

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The My Fabulous Disease Holiday Spectacular!

Friday, December 20th, 2013

(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 60 I have produced over the years. Enjoy!)

My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.

And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.

Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.

I am an extremely blessed and fortunate man.

King Family CarWhen I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?

Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.

SantaMarkSmallThe Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.

You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.

Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.

Mark

p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.

MOM’S CHRISTMAS TREE COOKIES

(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)

Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen

1 cup shortening
3/4 cup sugar
1 egg
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring

1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).

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Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | No Comments »

Once, When We Were Heroes

Thursday, November 28th, 2013

My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.

DickEmilEmil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.

It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.

Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.

Richard TodayThere were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.

There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.

There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.

There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.

There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.

hospital-wardMy best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.

Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.

Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.

There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.

There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.

Binder5 - CopyJeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.

He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.

“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”

“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.

“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.

“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.

“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.

There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.

Grab Mark InterviewThe truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.

He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.

To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.

But once, there was a time when we were heroes.

(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)

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PLUS…

knowpozguys“Know Stigma” (I hereby pronounce “stigma” the Word of the Year) is a terrific site devotes to photos and video that challenge our attitudes towards one another as gay, straight, femme, old, poz guys, etc. There are some really intimate, honest videos with people discussing the impact of stigma on all aspects of their lives. “We want to create a conversation around how we treat each other as gay, queer, bi, trans, and straight men,” says their site. “Like everyone, we have our biases and prejudices. Many of us are made to feel invisible because of age, body type or skin color. How can we say what we want without hurting others? How do we imagine our actions and words might make someone else feel?” Check it out.

stigmagrabAfter a lot of talk about HIV stigma, there is now a project in the United States that wants to actually quantify it and address it through leadership by people with HIV. “The People Living with HIV Stigma Index” has been launched in dozens of countries but only now has received funding to implement it in the U.S. It measures HIV stigma in the lives of people with the virus, and does so by training and employing people with HIV themselves to conduct the surveys. Watch a video of Laurel Sprague of the Global Network of People Living with HIV discussing stigma and this project with Eric Sawyer of UNAIDS.

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Stop Bludgeoning Young Gay Men with Our AIDS Tragedy

Thursday, November 21st, 2013

Lesley was my closest friend to become sick in the 1980′s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.

taregdy face grab 4 CROP BLOG SIZEBut there’s something I will not do. I will not dig up Lesley’s body and beat young gay men with his corpse. Lesley didn’t perish so I could use him as a scare tactic. He wasn’t a cautionary tale. He wasn’t a martyr. He was a man with the same passions and faults as anyone else, and I won’t use his death as a blunt instrument.

Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.

“If their friends all died like mine did, maybe they would think twice before having sex without a condom,” goes a typical remark, drenched in self pity and tenuous logic.

This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.

So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform “duck and cover” drills in case Russia drops the bomb.

To view these young men and say, in effect, “if only you saw all the death that I saw…” is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.

I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet — and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn’t going to win the respect or investment of younger men. It makes us as relevant as old men on the front lawn waving a rake at youngsters.

I take our community history very seriously. I’ve written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can’t wait for the release of Sean Strub’s upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history — and in recognizing that many of us still carry trauma born of that time.

Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the “Let’s Kick (ASS) AIDS Survivor Syndrome” project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.

That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, “people think you only have to take a few pills and that’s it,” we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I’m not going to deny all that in order to advance a fright-show storyline that isn’t my experience.

There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don’t include burying friends or serious health concerns, wasn’t that our goal all along?

Nowhere has our AIDS tragedy mindset done more damage than in the rollout of the unfairly maligned Pre-Exposure Prophylaxis (PrEP), the prevention breakthrough that allows HIV negative people to take anti-HIV medication to avoid infection. It is largely viewed as an alternative to condoms, which has quickly labeled HIV negative men taking PrEP as “barebacking sluts” by people coming unhinged at the very idea of unprotected sex. (Note: I remember when gay sex never involved condoms. It was glorious. I always thought getting back to a place where we had a real choice in the matter was kind of the point.)

There is something about the simplicity of PrEP (a pill a day! no condom negotiation! no guilt or judgment!) that is driving older gay men up the wall, considering their resistance to it and spurious claims of inefficacy, cost, and side effects. Tellingly, younger gay men have voiced fewer objections.

The facts are these: PrEP is at least as effective as condoms when used properly. The drug currently used for PrEP, Truvada, is well tolerated with few side effects. And despite fears and misinformation, it is being covered by insurance providers (do you know of even one claimant that has been denied?). For those without insurance, Gilead, the maker of Truvada, has a generous patient assistance program that allows you to earn a sizeable income and still get the medication.

Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of what we once knew to be true.

The 1980′s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.

May they rest in peace.

Mark

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PLUS…

ericrofes markichestDOTcomMy friend and early mentor, Eric Rofes, was an out, gay, kinky, deep thinking anthropologist that wrote the important book Reviving the Tribe, about building community among gay men during the AIDS epidemic, and Dry Bones Breathe, his follow-up work. He was one of the first to write about the value and even spiritual importance of anal sex for gay men and even exchanging bodily fluids (when he said as much at a forum for gay men in Atlanta I organized in 1995, it was as if a bomb went off, such was the hysteria). For a thoughtful overview of Eric’s work and influence, check out a piece from Charles Stephens about the Rofes legacy — and where his worked wasn’t fully realized. Whenever I fear my writing might seem provocative, I think of Eric Rofes, his bravery, and his lasting influence on the work of many of our leaders. Eric died far too early in 2006 of a heart attack. (Photo credit: Markichester.com)

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