Prevention and Policy
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.
But 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.
My 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)
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 31 Comments »
Sunday, September 29th, 2013
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. Maybe my video will help someone you know.
To be honest, I barely remember testing positive in 1985, when the test became publicly available (my doctor and I estimate my infection occurred as far back as 1981). I was already self-medicating with a growing drug addiction — it was Los Angeles, I was young and stupid, and people started dying; cocaine seemed like a reasonable response at the time — and the test result felt like my license to continue using.
Today, it’s hard for me to recall a time in which I was afraid of becoming infected. I only know a life living with the virus, and my fears of HIV itself are long past. So I should probably approach any advice for the newly infected with care. They are experiencing a profound event that happened to me a lifetime ago. I hope my light touch will give them a needed lift or bring them a smile.
It’s easy for me to make the mistake of assuming new infections only happen to younger people, and I even make an apologetic joke in the video about my being “old.” The fact is, most new infections in the United States happen to people over 30, not under. We might want to check ourselves when we bemoan infections among “these kids today,” (although of the various age groups with new infections, those under 30 remains the largest).
To participate in “You’ve Got This” with a video of your own, visit the Healthline site for details. Or leave your own word of advice in the comments section below!
Tags: aids, culture, drag, gay, help others, hiv, testing
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 7 Comments »
Tuesday, September 24th, 2013
Note: This essay has been shared more than 15,000 times from this site since it posted in July of 2012. Some readers responded angrily, and the barebacking aspect of the story brought both cheers and derision (one comment accused director Max Sohl of “crimes against humanity”). Frankly, I just thought the story of the film and its sociological impact was worth investigating; I appreciated the candidness of those connected to the film, as well as the social scientists and CDC officials who served as background.
The annual Folsom Street Fair in San Francisco is noted for its unbridled embrace of every star in our sexual constellation. Even the fearless leather community that founded the event can sometimes appear tame amidst the outlandish kinks and clothing – and lack thereof – on display along the city’s tilted streets.
In the middle of this rowdy bacchanalia in the fall of 2003, Paul Morris stood at the booth for Treasure Island Media (TIM), the gay porn outfit he founded that features unprotected sex (barebacking) between its actors. This particular specialty was the singular driving force behind his smashingly successful and relatively new company.
Then, like the legend of Lana Turner fortuitously cozying up to the counter at Schwab’s, a beautiful and achingly masculine young man approached the TIM booth. He liked the TIM videos, he liked them very much indeed, and he hoped to one day document a few fantasies of his own. TIM star Jesse O’Toole was on hand and someone snapped a photograph of the two of them together (right). In it, the grinning young man with a leather cap appears to have found his long lost tribe, and O’Toole looks as if he has found a seven-course meal.
The photo was sent to Max Sohl, a sometime porn actor with a theater background whom Morris had commissioned to conceive and direct what would be Sohl’s first porn film. Sohl met with the aspiring model and asked him to complete a form that included a simple question: What is one of your fantasy scenes? In response, the young man wrote simply, “me getting nailed and seeded by a gang of hot guys.”
“The Black Party was coming,” Sohl explained in a recent interview, referring to the annual New York City weekend of leather men, parties and sexual adventures, “and I thought, ‘Okay. Let’s see how many men he can take.’”
And that is how Dawson’s 20 Load Weekend was born.
Prior to the onset of AIDS, condom usage in gay pornography was nonexistent – but that was before bodily fluids became synonymous with death and disease. For well over a decade after the crisis began, gay porn videos featured not only tightly wrapped penises, but their storylines – indeed, the actors themselves – suffered from a sort of dramatic malaise, as if sleepwalking through their sexual routine while trying to pay no attention to the man with KS lesions behind the curtain. The videos mirrored our own lack of interest in gallivanting about with the pizza man or diving into an orgy with strangers, with or without condoms. Many viewers simply returned to their stash of pre-AIDS pornography, which was condom-less but “justified.”
As AIDS deaths subsided with the advent of new medications in 1996, gay male culture responded with a vengeance. Circuit parties were born of celebration (before succumbing to their own excesses), safer sex behaviors relaxed, and there was a palpable longing to escape the horrors of the previous years. Reclaiming a bold sexuality – something many gay men believed had been lost forever – was a tonic for the post-traumatic stress they suffered. Younger gay men, who had listened to stories of an earlier, sexually liberated time as if it were a lost era of paleontology, were more than willing to explore whatever modern version might await them.
Unprotected sex since the arrival of HIV is nothing new – it is, after all, the primary reason for new infections that have continued fairly steadily since AIDS began – but in the late 1990’s the gay community proved again how comically adept it is at applying a little branding to any phenomenon, and “barebacking” entered the public lexicon. The irony may be that a new word was developed for the oldest sexual activity imaginable: having sex without a barrier. It wasn’t the sex that had changed, but the meaning and judgment associated with it towards, most specifically, gay men. Or, as AIDS advocate Jim Pickett said at a recent conference for people living with HIV, “When a friend announces they are expecting a child, I feel like screaming ‘You barebacked!‘”
But while intelligent minds and passionate advocates argued about the reasons and the proper response to barebacking, no one had dared document it on videotape for the erotic pleasure of others. Yet.
In 1998, two renegade companies formed to make bareback videos exclusively: Hot Desert Knights and Treasure Island Media (links definitely NSFW). None of the leading gay pornographers would consider producing them (although they were eager to market their highly-profitable backlists of videos produced “pre-AIDS” that featured bareback sex). The cheaply made videos by the upstart porn producers brought the sexual choices of an increasing number of men out of the closet and onto DVD players and computer screens.
The videos were uniform in their low production values, the older ages of the actors, and the fact that several of them appeared to have the physical manifestations of HIV. It was as if a group of men who had literally lived through AIDS said, “oh, what the hell,” and demonstrated the kind of sex they had been having amongst themselves for some time. Their exploits were perceived as an underground fetish that would never break the surface of more mainstream gay pornography.
But then Max Sohl met that ferociously attractive man from the Folsom Street Fair who was so eager to “get seeded” by a string of strangers, and with the sexual zeitgeist now primed for their arrival, they made a film that would forever change the porn industry and quite arguably influence the sexual behavior of countless gay men.
Re-christened “Dawson,” the budding porn star was served up in a hotel room over the course of New York City’s 2004 Black Party weekend to an ongoing parade of bareback tops. Their sex was filmed in a documentary fashion, without music, scripted dialogue, or any effort to hide the many cables and cameras crowding the room. Dawson’s fantasy had been fulfilled, and Sohl had the footage to prove it.
In June of 2004, Dawson’s 20 Load Weekend was released and was precisely as advertised.
It might first strike the viewer that the video was created in an unsettling world in which HIV is utterly absent; that is, until a revamped sexual choreography is pointedly repeated again and again. While orgasms in gay porn before AIDS typically showed the top withdrawing from his partner and spilling his semen across his partner’s backside, the tops servicing Dawson had a different and very deliberate mission: to withdraw only long enough to prove their orgasm, and then re-enter Dawson immediately to show the injection of semen.
This was not a film that was made in the absence of HIV, but was created because of HIV. You can practically hear a disembodied voice whispering, “Watch closely. This is how gay men have sex now. That is where semen belongs. Fuck AIDS.”
Depending on your point of view, it is either a transgressive act of eroticism or an incredibly irresponsible act that demonstrates how to become infected with HIV. Or perhaps both.
In the center of all of this was Dawson himself, and never has bareback porn had such a virile and athletic leading man, much less one that bottomed with such disarming delight. “He was a higher quality male model that hadn’t been seen in that kind of extreme scene,” said Sohl. “The movie changed things because of Dawson. He was adorable, and actually smiles and laughs. He is Cialis joyful in that movie.”
“Bareback porn companies have blood on their hands,” became a common refrain among gay men and health advocates. Gay sex advice columnist Dan Savage equated the videos to child porn, believing they take advantage of the naïve and the vulnerable. Some accused TIM of making snuff films.
The video was wildly successful, ubiquitous wherever porn was shown. Even Sohl was surprised. “Our staff and even my friends would say ‘I go into a porn booth, a sex party, a hookup, and its playing,’” he said. “It was everywhere.”
Adult bookstores which had previously shunned TIM videos responded to customer demand and began stocking them, even creating bareback sections on their shelves. Gay porn sites that once refused to feature bareback clips began including them. Dawson and the film became the definitive symbol of a bare, wanton sexuality that eschewed condoms and refused to be denied or intimidated by the virus.
Soon, more companies produced bareback porn, and they were able to attract “collegiate jock” types who were younger, more muscular and the very picture of health and vitality. The faces and bodies in bareback videos had been transformed, erasing all evidence of HIV, much like the invisibility of HIV/AIDS in our broader culture.
When considering the legacy of his film, Sohl is more pragmatic than proud. “The concept of taking twenty loads in 2004 was beyond taboo, but to say it in 2012… it doesn’t seem as extreme today,” he said. “I’m sure someone else would have done it. It just so happened to be us.”
Neither does Sohl admit to any trepidation about the safety of his actors, then or now. “I’ve been doing this since 2004, with thousands of men, and have had only one guy claim to get an STD (on my set),” he explained. “Probably 50 percent of my casting job is being an HIV counselor,” he adds, without a hint of irony. “I spend a lot of time talking about HIV. My feeling is that people need to be responsible for their own actions and make informed decisions.”
One of the people making decisions while living with HIV is none other than the actor known as Dawson, who disclosed his HIV positive status to The Windy City Times in 2005. While his HIV status may surprise no one, something else he said in the interview was sadly revealing. “It was after turning positive that I made the decision to look into doing a movie for Treasure Island Media,” he said at the time. “I had seroconverted a few months before…”
After an HIV diagnosis, many people use it as an opportunity to re-examine their lives, make different choices, or otherwise take steps to enjoy their life in whatever ways are important to them. For the man who would be Dawson, his seroconversion was followed by the choice to be an unapologetic cum whore in front of video cameras. This may have been his fantasy, but it certainly fuels the stigmatizing belief that people with HIV are irresponsible vectors of disease, spreading infection and abandoning whatever sexual values they may have previously held.
Perhaps, then, the film was a treatise on the kind of sexual liberation available to HIV positive gay men today, demonstrating the “new normal” for those who take their meds, eliminate the viral activity in their blood, and “fuck freely and without fear,” as TIM founder Paul Morris once put it. Or did it simply portray poz men as sluts, a charge leveled by disgusted (and possibly jealous) HIV negative men?
“What a person is seeing has more to do with them than with us,” said Sohl. “The best mode of action is not to confirm or deny anything. I will see a scene online that I directed,” he says, referring to the many porn sites that pirate pieces of his work and give them new titles, “and it will be renamed ‘negative bottom takes poz loads,’ as if it were a conversion scene. We never said that. Or people think the bottom is using crystal meth. That says more about the guy watching it than what actually happened.”
That relationship, between porn and viewer, is something of particular concern to some HIV prevention advocates who believe bareback porn encourages unsafe sex in real life. This resulted in AIDS Healthcare Foundation’s recent campaign to mandate condom use on pornography sets, a move that was popular on a simplistic level but did nothing to address the myriad of factors associated with actual HIV risk and relative safety, such as an undetectable viral load, serosorting, or the precise sexual behaviors involved.
While social cognitive theory states that we make behavioral decisions based on watching others, very little research has been conducted on the causal relationship between bareback porn and real behavior. In what little has been studied, researchers can’t decide if barebackers watch a lot of bareback porn, or bareback porn makes people barebackers.
It is a riddle that Max Sohl is surprisingly happy to solve. “Absolutely” he said. “Of course it is going to influence what people do.” When asked, then, what is the responsibility of porn, Sohl would have none of it. “The responsibility of porn,” he says impishly, “is to make the guy watching it shoot a load.”
Dawson is, now and forever, committed to videotape and featured on dozens of online porn sites, happily receiving the prize he so ardently desires. He and his progeny of newer, younger porn actors have crossed a line and they’re never coming back. Their video escapades are available online everywhere and for everyone, including young gay men who are just coming out and surfing the internet for validation of their sexuality.
What those young men will almost certainly see online are depictions of unprotected sex, because bareback videos now outperform scenes of condom usage on every site that carries them – and most of them now do. It is unquestionable that bareback sex will be viewed as typical to the uninitiated, and anyone crafting safer sex messages to those young men is going to have a difficult time trumping those images. The “use a condom every time” message is officially dead, drowned in buckets of bodily fluids by Dawson and his barebacking brethren.
Dawson’s 20 Load Weekend redefined bareback porn and the men who appear in them. It influenced subsequent videos and expanded the availability of bareback films. It depicted a prevailing truth about gay sexual behavior “post AIDS,” and arguably encouraged risky sexual adventure-seeking. It led to the saturation of bareback porn online, making unprotected sex normative to whomever might be watching. To dismiss this film, to minimize its social and cultural impact, would be to demonstrate a profound misunderstanding of gay sexuality today.
“Barebacking is a right,” gay anthropologist Eric Rofes once wrote. “After all, practically every straight guy in the world gets to do it without being told they are irresponsible, foolish, or suicidal… Barebacking is liberation. Barebacking is defiance.”
How foolish, prescient, liberating, enlightening or destructive barebacking may ultimately become is something that may only be revealed in the next chapter of our gay community’s troubled history.
(Photo of Dawson and Jesse O’Toole courtesy of Max Sohl and edited for content. Other images courtesy of Treasure Island Media [NSFW].)
TWO MORE POSTS ON BAREBACKING and/or GAY SEX:
“Your Mother Liked it Bareback” loses all patience with the finger pointing and judgments being hurled around between gay men when it comes to choices about unprotected sex. In short, it asks us to broaden what it means to have “safer sex,” and to acknowledge there are now many prevention techniques that do not involve condoms. Check it out.
“Why I Stopped Going to the Baths” is a riot, explaining my decision to stop, well, going to the baths. Any posting that begins with “The last time I went to the baths I stepped in poop,” can’t be all bad, right?
Tags: aids, barebacking, culture, gay, hiv, meth, Recreation, research, serosorting, Sexuality, testing
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »
Monday, September 16th, 2013
At the recent 2013 United States Conference on AIDS (USCA) in New Orleans, the word “stigma” wafted through the event, in workshops and throughout the exhibit hall, like an annoying new pop song you couldn’t stop humming.
The Stigma Project. The Mr. Friendly campaign. The CDC “Let’s Stop HIV Together” media campaign. My own POZ Magazine stigma cover story issue (“The Sound of Stigma”), an indictment of gay community and the antipathy between positive and negative, sat in stacks at the POZ booth. Panel discussions and workshops were held on identifying stigma, combating it, living with it. If Lady GaGa would only record an anthem about it, she could finally knock Katy Perry off the charts.
But there’s good reason for it. As Peter Staley (How to Survive a Plague) said in a session of people living with HIV, “One of the biggest generational shifts that I find most depressing is that most of the stigma we deal with now comes from within communities.”
In my video blog recap, you’ll meet as lot of people addressing this issue in various ways. You’re also going to meet advocates of both the celebrity variety (Mondo Guerra of Project Runway (photo at top), and photographer Duane Cramer) and those doing the work on the ground in communities large and small. As usual, it was the people and their personal commitment that caught my attention, and this recap is a salute to their efforts.
The generational differences Peter Staley spoke of is also a curious new bend in the culture of HIV. Once upon a time, our communal experience of AIDS, at least as gay men, was much the same. Our lives were bound in the sameness of death, despair, and then, hope. But since then our generations have separated, with younger gay men less traumatized or fearful about the virus, and (too Xanax many) older gay men judging them for behaviors and mistakes we ourselves made in our youth. This too is a subject ripe for conversation, with writers like the irritatingly young Tyler Curry broaching the topic, and public forums springing up to address the matter of post-traumatic stress among “the AIDS generation,” which I suppose means me.
To some, conferences like USCA represent “AIDS, Inc.,” or a waste of resources that feels self-congratulatory and a poor excuse for plane flights and rubber chicken plenary lunches. I disagree. If the pharmaceutical industry, highly visible and paying much of the tab at events like these, wants to underwrite sessions while promoting their key messages and products, they can be my guest. Conference attendess are sharp enough to take what they need and leave the rest, and the pure energy and support between those doing the work is worth the cost in my mind.
As Paul Kawata, of the National Minority AIDS Council, the producers of the event, said to me, “If we can inspire people to devote one more to year fighting this epidemic, I feel like we’ve won.”
Thanks for watching, and please be well.
I have the privilege of presenting “Mark’s Poz Time Machine” at a retreat for poz men in Montana this weekend, hosted by the Montana Gay Men’s Task Force. I really enjoy this presentation, which is an interactive walk through the history of of HIV/AIDS, from 1981 to the present, using video clips and photos, my own story, and drawing upon the life experiences of participants along the way. From my pre-AIDS win on The Price is Right to the tears of the mid 1980′s and then a re-established HIV culture, it allows everyone to contribute some powerful storytelling and a shared history. If you would like more information, contact me. I come cheap.
Monday, June 24th, 2013
My first “AIDS job” in 1987 was at the first AIDS organization in Los Angeles, LA Shanti, and we provided emotional support to clients with AIDS who were usually in their last weeks of life. The intimacy our trained volunteers experienced with the dying, helping them find some inner peace as they left us, is worthy of its own blog posting sometime. Let’s just say it was intense.
We hoped for a cure early on, and then our hope faded. Before long, we didn’t dare hope any longer. We just wanted treatment to ease the suffering and slow the dying, and those prayers were answered in 1996 with the advent of protease inhibitors. It seemed greedy to tempt the fates and begin asking for a total cure again.
But greed isn’t what is driving the treatment advocates you are about to meet in my latest video blog. Far from it. They have faith, based on scientific research and some hopefulness of their own, that a cure for HIV disease can be found. And they care enough about our community to keep pressing the issue at HIV research conferences.
They are cautiously optimistic. But their faith is contagious, if you’ll pardon the choice of words. And they also know that that we got protease inhibitors because of the same kind of tireless community efforts that they are displaying now.
In fact, one can easily connect the dots from the activists shown in the Oscar nominated documentary How to Survive a Plague to this current crop of treatment advocates who are trying to take HIV research across the finish line.
You can take part in all of this, of course. To volunteer for a clinical trial or see what might be happening in your area, visit ResearchMatch.org or ClinicalTrials.gov. If you’d like to join the advocates in their work or follow their progress more closely, check out the AIDS Treatment Activists Coalition.
I’d like to thank the always resourceful Nelson Vergel for gaining me access to a gathering of these community activists. For updates of current cure research, Nelson has excellent posts on TheBody.com like this one.
I’d like to thank those who participated on-camera: Jeff Berry from Positively Aware, Jeff Taylor of the AIDS Treatment Activism Coalition, Moises Agosto of the National Minority AIDS Council, Steven Wakefield of the HIV Vaccine Trials Network, David Evans of Project Inform, and poz activists Mark Hubbard and Matt Sharp.
Thanks for watching, and please be well.
Thursday, June 20th, 2013
National HIV Testing Day is next Thursday, June 27, and there is no better time to praise the many HIV negative gay men who are making smart decisions to remain that way. Hooray, HIV negative gay men! Let’s show some love for our negative brothers, who’s with me?
Oh, Lord. Now I’ve done it. By showing support for negative guys, I am clearly demeaning HIV positive men. But wait! I’m HIV positive myself. So, that must mean I’m being sarcastic in my support of negative guys, because there’s so little room for sincerity and goodwill in the chasm between HIV positive and negative gay men. That space is already so crowded, what with all the stigma and simmering resentments.
Some days I just want to go back to bed.
When I produced the quick video above three years ago, my intent was to celebrate the accomplishment of any gay man who is sexually active and has managed to remain HIV negative. It was produced by myself and my gay, HIV negative older brother to spread a little love across the viral divide and encourage HIV testing. That was it. No other agenda.
While initial reactions to the posting were quite good from both HIV positive and negative people, the pendulum swung quickly. Comments began to label my overly theatrical style (ouch!) as sarcastic. Some found the message demeaning to positive people. Some found the message demeaning to negative people. My goodwill became shrouded in a fog of distrust and what-about-me?–ism.
You can watch and decide for yourself (now that I’ve tainted the thing, darn it). But I stand by my sincere intentions to offer a hearty pat on the back to HIV negative men and support for their personal set of challenges and anxieties. I hope you’ll share it with an HIV negative friend you care about (the direct YouTube link is here.)
I would do it differently today, however. At one point in the video, I suggest that negative guys might like to have unprotected sex, but that they shouldn’t “do that.” That’s an outdated and judgmental mandate. Today, with new tools such as pre-exposure prophylactic treatments, and new understandings about what it means to be HIV positive and undetectable, what constitutes “safer sex” is a much broader list than simply whether or not you engage in sex with a condom or not.
Or, as I like to say, your mother liked it bareback.
Oops. I stepped in it again. Release the Kracken!
The annual HIV Cruise Retreat is in its last stages of booking, and it will be the largest group of HIV positive men and women the cruise has ever had aboard. Even though the cruise does not sail until early November, several cabin categories have sold out. If this is something you are considering I would urge you to contact Design Cruise Travel NOW for information. I have the pleasure of being the MC of this trip again this year, but I receive no compensation other than a cheaper rate on my cabin. I do it happily because I am in favor of anything that builds community among people living with HIV. Check out my video blog posting from last year!
Tags: aids, barebacking, culture, gay, help others, hiv, politics, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »
Thursday, June 6th, 2013
You must know this, because it matters. Because it has already changed your life, no matter who you are, and you may not even realize it. Because as we search for a new national voice for people living with HIV (since the ugly demise of The National Association of People with AIDS), and as LGBT community leaders pledge to re-commit themselves to HIV issues, the voice of people with HIV matters more than ever.
That isn’t about a vague concept. It began at a very real meeting, which gave birth to a very real, tangible document. And it happened exactly thirty years ago this month.
It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. And among their number, the inspirational Michael Callen of New York City, pictured at right, and safe sex architect Richard Berkowitz (Sex Positive), the only surviving member of the group today. They were about to do something that would change our response to AIDS — and health care in general — forever.
As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment” hadn’t yet been a part of the health care lexicon, it was about to be.
The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’”
The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.” Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.
They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.
They demanded that physicians see their patients as “whole people,” and provide “accurate information.” They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.
They asked “all people” to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.
Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else” for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.
While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.”
A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.
When longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event a few years ago, he devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That sort of work continues today, with plans underway to conduct a “Stigma Index” survey in the United States, measuring levels of HIV stigma and employing people with HIV in the process.
Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980′s and 90′s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.”)
The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.
So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.
(This is an updated version of something I posted in both 2010 and 2011. But as a man who blogs about living with HIV — and for you, reading my content — The Denver Principles and what they represent are that important. Are they outdated, since most people living with HIV today have never heard of them? I don’t believe so. I wasn’t around for the creation of the Bill of Rights and might not be able to recite them all to you, but I sure do want my leaders and governance using them for guidance. — Mark)
As we enter June and all of the various Gay Pride festivities around the country, let me offer this gentle reminder that pride is about a lot more than drink tickets and cover charges and body image. Yes, that’s easy for me to say, since I’m as guilty as the next guy about my GYM OCD and aging fears — and Gay Pride only worsens my anxieties. I’m working on it. BUT. Back to you. I hope you will take three minutes and watch my “Gay Pride PSA” that I post each year around this time. If you haven’t seen it, it’s very funny. Well, until it isn’t. And it leaves you with a message I hope you will carry through this month and share with your friends. Check it out!
If, on the other hand, you prefer to leave the emoting to actual theatrical professionals (haters!), then you might really enjoy a five-minute highlights compilation from the one-night-only re-staging of David Drake’s important play on being gay and early AIDS activism, The Night Larry Kramer Kissed Me. Only 600 very lucky people could be seated in the hottest ticket in town that night (my ticket, and my plane fare and hotel and entourage, were evidently lost in the mail, and I’m firing my assistant), but now you can get a glimpse of some of the magic witnessed that evening. The most moving moment? Seeing that angry lion himself, Larry Kramer, in a photograph with Drake after the performance. It reminds me of one of my favorite buttons from the 1980′s: “Annoy them… SURVIVE!”
In the “Gratitude for Our Privileged Lives” department, how about the amazing David Phillips, a long time poz activist from Maryland who has been crisscrossing Kenya with a group of students and their professor from The George Washington University School of Media & Public Affairs. “On June 4 we visited with Mama Beatrice and several of the people living with HIV whom she has aided,” David said in a Facebook posting. “The stories of discrimination and stigma which they shared were jarring for the students to hear.” Most humbling to me, though, was this: “Some of these fellow HIVers were shocked to know that mzungus (white people) get HIV, too,” David said, “and all were excited to meet someone thriving in the face of HIV for over 10 years, amazed by 31.” Are you feeling blessed right now? You’re welcome.
Friday, May 24th, 2013
At a recent town hall forum in Washington, DC for people living with HIV, the very idea of what it means to be positive — and who is our national voice of advocacy — was questioned. With the demise of The National Association of People with AIDS (NAPWA) earlier this year, it’s an important conversation to have.
The forum, sponsored by the Federal AIDS Policy Partnership, a coalition of AIDS-related organizations and interests, didn’t bear much fruit in terms of hearing the feedback of people living with the disease. The event was lightly attended in person, with most of those living with HIV present representing some organization or another, and the online viewers had technical problems and, presumably as a result, contributed very little.
The most compelling minutes of the event, to me at least, were courtesy of the sheer audacity of former administrators from NAPWA (like Frank Oldham, pictured above), who made a pitch for their new HIV advocacy venture. After bankrupting a multi-million dollar agency and charges of financial malfeasance, you’d think they would opt for a lower profile. In this video episode of My Fabulous Disease, I take them to task and even provide a dramatic reenactment of some of their organizational negotiations. I can’t wait for you to see it.
The day following the forum I attended a scheduled meeting of the the Federal AIDS Policy Partnership (FAPP), and heard excellent presentations on the state of Ryan White during healthcare reform (iffy but hopeful), and how we as people with HIV can best navigate Obamacare (tip: go directly to www.HIVHealthReform.org and get educated).
In light of the town forum they hosted, I also strongly encouraged FAPP to add seats on their body specifically for people with HIV — or for representatives from coalitions for people with HIV — so there would be voices of people with HIV that wore no other hats or were tied to other agencies or agendas. I look forward to giving you an update on whatever steps they might take in this regard.
Thanks for watching, and please be well.
p.s. Frank Oldham has resigned from his position with Pozitively Healthy. Should other NAPWA officials involved in the new endeavor follow suit?
Sunday, March 24th, 2013
I have some amazing friends for you to meet.
Beginning two years ago, TheBody.com asked me to produce a series of videos (“A Day in the Life: Keeping Up With Your HIV Meds”) that would profile a person living with HIV, what their day looks like, and how their medication regimen fits into their daily routine. It was a great opportunity to highlight the everyday lives of people living with HIV, but also to let their spirit and passions come through, and show we are whole people — not simply the virus.
The profile subjects came from all walks of life, in various cities around the United States, and their personalities and interests — their families, their hobbies, and even how they became HIV positive — were all I needed for inspiration.
Below are the eleven videos that have been produced to date for the series (an ongoing feature on TheBody.com and they also have an entire resource center about keeping up with your meds). You can watch the videos here, or follow the link in the title to view the post as it appeared on TheBody. They are each less than ten minutes long; just scroll through them below and find a story that sounds like yours — or better yet, hear what the journey of someone completely different from you is like! Are you ready?
Damaries is from South Florida and could not have been more lovely; we laughed a lot during our day together. Her strength is what impressed me most: she did not come to the decision to start HIV medications lightly. She really did her research before she began a regimen. Filming her story was also a great excuse to hit the beach, since she loves to find her peace and tranquility on that gorgeous sand.
Well, first of all, Tree is adorable. So there’s that. He also has an equally adorable dog, who tried mightily to extend his few minutes of fame by sneaking into the camera shots and barking woefully from the other room. For his part, Tree does a great job explaining how he kept his medication regimen despite multiple moves and even being homeless for a brief period. I really like the Brooklyn montage of Tree’s neighborhood at the beginning of the video.
What an elegant woman Eva is. She was so gracious during our day together and had an almost regal sense of self. She really impressed me. Not only did she make peace with the man who infected her many years ago, she became an advocate for all women living with HIV and devoted quite a lot of time to volunteer work. She’s also an avid traveler — I’ve never seen so many magnets from exotic places on one fridge in my life.
What a hoot! Robert (Bobby) Darrow and I were childhood friends, when we both performed in community theater together in Shreveport, Louisiana (we were both newsboys in Gypsy, for all you musical theater queens). As we grew, he always got the good parts and I ended up working the spotlight — shining it on him — but I’m not bitter, I swear! Producing this video was a great chance to honor my lifelong friend for the activism he has done since the beginning of the AIDS epidemic. And it also allowed me to honor theater itself, and how Bobby is now back in the very place he and I so loved when we were kids. This one is special to me.
You’re going to be blown away by the strength of this woman’s convictions — and the strength of her marriage. Brooke learned she was HIV positive during her pregnancy, and not only was her husband completely supportive, he stood by proudly as Brooke became a visible advocate for woman’s health, the importance of HIV testing, and their personal struggle to afford HIV medications so that their baby would have a better chance of being born without HIV. And speaking of babies, guess who steals the show in this video?
Khafre was one of the most immediately spiritual people I met during this series. He has a very strong sense of faith and a commitment to his own spiritual principles. He was also in the midst of organizing a fund raising bike ride across the country to benefit HIV/AIDS services for people of color, and I admired his dedication and pure energy. The time he devoted each day to prayer and meditation was really lovely to observe and capture in the video.
Petra & Efrain could give the other couples in the series a real run for their money for the title of Most Romantic. You can’t help but grin, watching Efrain describe seeing his future wife for the first time at an AIDS conference, where both were community advocates and both were living with HIV. They not only lift up one another during the frustrations of HIV life, they know how to take time to love and enjoy one another, as their salsa demonstration clearly shows.
Tales of triumph over adversity don’t come more dramatic than the story of Fortunata. Not only is she the single, proud parent of a gorgeous daughter (the apple doesn’t fall far from the beauty tree), she had a devastating accident when she was hit by a car walking across the street — and then had to manage her HIV meds along with a host of others while she recuperated. The fact that she relates all this with such grace was amazing to me. I had so much footage of her simply looking ethereal and lovely, the video could have been twice as long.
Anyone who follows my blog — or HIV/AIDS advocacy — knows what a gift Nelson is to our community. He’s been our own Jack LaLanne of HIV, teaching the importance of health, exercise and nutrition since the beginning of the epidemic — the video blogs he did with me on nutrition (where he cleans out my fridge) and exercise (where we hit the gym together) are hilarious and very informative. And, of course, he has a hot body. It might come as some surprise, then, that he’s very modest when it comes to showing it. I had all sorts of shots and angles I wanted to do that would have shown of his physique, and he politely demurred. He also was always focused in our interview on what would apply to regular folks living with HIV, rather than the more privileged among us. In other words, the man is a class act, with a humility that speaks volumes about his integrity and commitment.
I’ve been watching Robert grow as an HIV/AIDS advocate for several years now, since he began POZIAM social network and radio show while still in his twenties. I had fun doing the fast cuts that open his video because I thought it captured the sense of motion and vitality he has. When I become disheartened, wondering where are the next generation of activists on the scene, I remind myself there are people like Robert.
I’ve always been open on my blog about being in recovery from drug addiction, and George — who survived 27 years of street drugs — and I had an immediate connection. He devotes his life today to service for others, whether it is at an AIDS agency or through various addiction activities. In fact, something he said about his recovery during our interview really made sense to me, and I stopped the camera and shared some of my own story. For nearly thirty minutes he let me pour out some of my own fears and challenges, and listened with the attention of a man who has been there. I think his spirit is well-represented in this video.
To watch George’s video, just follow this link to TheBody. This video is so hot-off-the-presses that I’m not able to share it here yet. Follow the link and hear his story.
I learned a lot of each of these people, and I know they represent a tiny fraction of the courage and daily fortitude displayed by people living with HIV every single day. I really want to thank this group for taking me into their homes and lives and allowing me to share their stories with you.
Thanks for watching, and please be well.
Tags: aids, gay, help others, hiv, lipo, physician, recovery, research, Sexuality, testing
Posted in All Other Video Postings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »
Wednesday, February 27th, 2013
The turning point could be traced to August of 1998. It was the month that, for the first time in well over a decade, the Bay Area Reporter did not have a single AIDS obituary submitted for publication. The promise of protease inhibitor medications had been realized, and it felt for many that our long community nightmare was coming to a close.
The milestone in the life of San Francisco’s LGBT newspaper was celebrated around the country and became a media story unto itself. “AIDS Deaths Take Holiday,” trumpeted the Pittsburgh Post-Gazette. “For Once, No AIDS,” said the Wilmington Morning Star. The headline in the Spokesman Review assured us that “No News is Good News.” The Bay Area Reporter’s own front page carried two words in enormous type: “No Obits.”
That could be seen as the moment in which coverage of HIV in gay media began to fade.
Today, the LGBT community is celebrating other milestones with joyful regularity. The right to serve openly in the military. Marriage. Growing acceptance and political muscle.
HIV/AIDS has largely moved off the front page and out of public consciousness. Despite newsworthy data such as increased HIV transmission among gay men and the ongoing slaughter of gay black men in particular, those stories feel stale. It has all been said so many times before. Even new storylines, such as Pre- and Post-Exposure Prophylaxis, cure research advocacy, and tools on the horizon such as rectal microbicides, it’s become harder to capture the imagination or interest of the gay community. When new data was reported recently showing that half of the 20-year-old gay men today will have HIV by the time they’re 50 (and if they’re black, that figure rises to a whopping 70 percent), the news barely rated a tweet or newspaper item.
What, then, is the responsibility of LGBT media in this climate of rising infection rates and a bored readership? Are they simply reflecting the community’s waning interest, or do they have a responsibility to keep HIV in the headlines, to serve as advocates for better public awareness?
I was just in the perfect place to ask these questions: The 2013 LGBT Media Journalists Convening, held in Philadelphia and sponsored by the National Lesbian and Gay Journalists Association. About 100 media professionals, including a healthy dose of bloggers like myself, attended the event, which educates LGBT journalists on various issues so they we might report on them with more authority. Those issues this year were transgenders, immigration, aging, labor, and international rights.
The absence of HIV/AIDS wasn’t lost on me, I assure you (AIDS activists called them out about this in real time in the event’s Twitter feed at #LGBTmedia13) and it became the topic of my interviews with various people in attendance. Their very personal answers – and undeniable passion for the cause of HIV in many cases – sure made it a little easier to understand the tough choices they are making every day. I will be very interested in your reaction.
Aside from my griping over HIV coverage, it really was terrific to be in the company of a lot of dedicated journalists, and I appreciate very much the work done to mount the event, including the contributions of Bil Browning of The Bilerico Project (pictured with me above, at right).
Is sparse HIV coverage just a sign of the times? Is it progress? And what can we do to increase visibility again?
The journalists in my video provide some answers, but I especially liked the observation by gay political activist David Mixner, who reminded me that coming out, whether as gay men or as someone living with HIV, is the greatest tool in fighting stigma and helping people see the importance of the issue. I’m glad I have some company in the poz blogosphere, but we can always use more voices. Anyone who has the ability to share their story, online or across the dinner table, can make an awesome contribution.
Meanwhile, I’m going to keep nudging my LGBT media colleagues, and I encourage you to do the same.
Thanks for watching, and please be well.
Tags: aids, barebacking, criminalization, culture, gay, hiv, politics, research, serosorting, Sexuality, testing
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 7 Comments »