Posts Tagged ‘research’
Thursday, January 14th, 2016
Dr. Oz has a very strange verbal compulsion. He can’t stop making lame metaphors.
When taking an early morning jog with Charlie Sheen, in the first of their two-part interview for The Dr. Oz Show, the doctor sees metaphors everywhere. “You have to look down so you don’t see how steep the hill is,” he says as they putter upwards. “It’s sort of like life, isn’t it?”
Descending the hill sparks another metaphoric burst from the talk show physician. “It’s always easier going downhill,” he says to Charlie. “What’s going downhill like now that you’re public about your HIV?”
It became tough not to participate. Oh look, doctor. A rock. It’s like the hard place Charlie has found himself. Or maybe it’s the blunt instrument I will use to bash my head in after watching this inane, dangerously misinformed interview.
I had such high hopes. Charlie’s coming out interview on The Today Show was as focused and informative as anyone could have expected from the troubled star. I was actually moved by Charlie’s discomfort, and related to his obvious apprehension about making such a public disclosure. Better yet, the interview had the entire world talking about the meaning of “undetectable viral load,” something I never saw coming and a great service to HIV education.
Well, it was great while it lasted. I am dismayed to report that Tiger Blood Charlie is back and he has gone rogue. And his Chasing the Cure! conversation with Dr. Oz might be the worst thing to ever happen to AIDS cure research, or at least the most irresponsible reporting about it.
But first, before the TV show bothers to get to the “provocative development in his search for a cure,” we must wade through the first hour and tour the home of the we’re-pretty-sure-he’s-not-batshit-crazy-anymore star. He makes healthy shakes! He loves movies! He throws a baseball! Hey, there’s the tastefully appointed bedroom where he banged and allegedly assaulted women!
Charlie does discuss his treatment and their side effects. “Poopy pants,” he reveals. His advice is to wear black underwear. I intend to contact Treatment Action Group immediately to share this revelation.
To his minimal credit, Dr. Oz shows concern for the various addictions of his guest, from gambling to cocaine, but his light touch suggests this circus can’t afford for the star to bolt. Never mind that Charlie claims he only stopped drinking once the Today Show interview was complete, and that he has tried to stop “hundreds of times” before. Appearing on national television is apparently much more therapeutic than finding the nearest rehab facility.
But on to the second hour, an in-studio interview with a live audience. This is where it gets really interesting — and gruesome and creepy and utterly insane.
Dr. Oz revisits Charlie’s hard-partying lifestyle and then asks him more questions about the horrendous, terrible news that he tested positive. The sum of the conversation was that Charlie Sheen’s diagnosis – and by extension, all of us living with HIV – is comeuppance for his crimes against nature.
But the best was yet to come. Finally, well into the second hour, Charlie reveals that his Chasing the Cure! led him not to actual experts in the field, but to Dr. Samir Chachoua, a doctor in Mexico about which little is known, except that he resembles Grizzly Adams after a hard night in Tijuana. Charlie had such faith in his quest that he stopped taking his medications in anticipation of seeing this nut.
And this Doctor of Quackery, in a phone interview with Dr. Oz, claims to have cured Charlie of HIV. “He’s the first person in history to go HIV negative,” says the Mexican madman, apparently unaware of the name Timothy Ray Brown. It’s like a crazytown online denialist come to life. But wait, there’s more.
Chachoua says, and Charlie concurs, that he drew blood from Charlie and then injected it into himself to prove his case, and that Charlie remained undetectable. Never mind that this was mere days after Charlie had discontinued his meds, which surely were still working in his bloodstream. The entire, bizarre scenario was like something out of American Horror Story: AIDS.
Back in the studio, Charlie’s own doctors reveal that his viral load has spiked again. His personal physician pleads with Charlie to go back on his meds. Charlie sunnily agrees. “What, am I crazy?” he jokes, to scattered, confused applause. Thus ends his first chapter of Chasing a Cure!
I prayed that Dr Oz would then introduce someone from the American Foundation for AIDS Research (AmFAR) to preset real facts about the current state of cure studies. Wouldn’t treatment activism icon Peter Staley make an excellent guest? David Evans from Project Inform? Please God, anyone. My prayers went unanswered.
Instead, Dr Oz turns from the actual physicians in the studio to pursue a far more important line of questioning. At this critical juncture in the interview, it was important to discuss movies.
“You describe your journey, chasing a cure for HIV,” Dr. Oz says in his most empathetic voice, “in a way that is similar to your dad’s journey in Apocalypse Now.” I’m sure Martin Sheen watched with pride, knowing his film career had become relevant again. “Has your diagnosis with HIV brought you closer to him?” The camera moves in to Charlie greedily.
Somewhere Barbara Walters was rummaging through her penthouse for a rope to hang herself.
There were actually a group of HIV positive women in the studio that day, some representing Positive Women’s Network, and during the taping they were given the opportunity to offer what was undoubtedly some much-needed perspective. But evidently they had nothing to say about Apocalypse Now or they were really bad at metaphors, because the segment was cut from the broadcast.
Charlie Sheen isn’t going anywhere soon. There is always hope he may regain his senses and become the high-profile cure advocate we need. But what we are currently witnessing is the exploitation of a deeply troubled man with multiple addictions.
Whether Charlie Sheen follows the path of other distressed celebrities, be it recovering addict Robert Downey Jr. or the very dead Amy Winehouse, remains to be seen.
(This piece originally appeared as one of my blog postings for POZ.com – Mark)
Tags: advocacy, aids, culture, help others, hiv, physician, politics, recovery, research, testing
Posted in Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Friday, November 6th, 2015
Some years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He could tell my HIV status by my face.
I had The Look. The sunken, wasted cheeks of someone living with HIV. It became a common manifestation in the 1980’s and persisted until the medications that caused the condition, known as facial lipoatrophy, were changed or abandoned for better treatment. (That’s me, right, in 2008.)
Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4t and ddi more than twenty years ago.
I’m one of those long-term survivors. I am proud of my history advocating and living with HIV. But as uncomfortable as it may be to admit, it’s a lot easier to live openly as a person with HIV when you don’t look like it.
When the symptoms began to appear, it meant that the choice to share my status, as an activist or on a personal level, had been taken away. My HIV was written across my face for all to see.
I felt ashamed, and then conflicted. For someone who has been fighting so hard to reduce HIV stigma, what is there to be ashamed of, exactly? Many of the physical signs of HIV treatment – from weight loss to fat redistribution to facial wasting – are worn as battle scars, if not badges of honor, by thousands of people living with HIV. My disease is mirrored in my physicality. What’s wrong with that?
And so, I began a journey that would include multiple visits to a specialist and more than $20,000 worth of various “facial filler” products injected into my face. My biggest advantage was the physician I chose: Dr. Gerald Pierone, arguably the most experienced person in the country on facial fillers and a contributor to TheBody.com. (That’s me, at right, last week.)
Along the way I chronicled my journey through video blogs. They span more than six years, explicitly show the treatments in Dr. Pierone’s office as well as before and after footage, and include a wealth of information and advice about getting facial lipoatrophy treatment, the products involved, and their relative costs.
Here are three of those videos that are probably the most helpful.
A Facial Wasting Update
In this video, below, I chronicle my third visit to Dr. Pierone, who checks up on my progress with temporary fillers Sculptra and Radiesse, and offers his own perspective on my treatment regimen. It is a good introduction to facial lipoatrophy and the treatment available.
I’m Gonna Wipe That AIDS Right Off My Face
Once again I return to Dr. Pierone for a check-up, but this time I inquire about a new, semi-permanent filler now known as BellaFill (formerly Artefill). This video also includes a lot of information about patient assistance programs for the temporary fillers.
Treating My Facial Wasting with Artefill
Switching to this permanent filler, now known as Bellafill, was the best decision I made. No more disappearance of the temporary fillers over time! Although this semi-permanent filler does not have a patient assistance program and can be quite expensive, I must say that the results have been dramatic and long-lasting.
One thing these videos make clear: facial fillers are not the fountain of youth, no matter what The Real Housewives may think. You can clearly see my own aging process through the years in these videos. What they do show, however, is my face as it would have been: aging naturally as if HIV wasting had never been an issue.
If you have any questions, I would encourage you to direct them to Dr. Gerald Pierone in the Ask the Experts forum at TheBody.com. I cannot recommend his expertise highly enough.
And as always, my friends, please be well.
Tuesday, September 15th, 2015
Not to get all southern gothic on you, but I depend upon the kindness of strangers. Especially when producing video blogs at conferences.
“Excuse me, would you please just hold this camera and point it at me while I talk to these people?” I must have said that sentence at least 40 times during the United States Conference on AIDS (USCA), held recently in Washington, DC. Every single interview you see in my video blog below was shot by whomever was wandering by at the time. Thanks, y’all!
The video contains three AIDS czars, one stripper pole, a ferocious batch of trans protestors, and more inspirational front-line workers than you can shake a stick at. My congratulations to the National Minority AIDS Council for their famously creative production of the weekend.
The spirit shared by the advocates, healthcare providers, and organizations who convened for USCA was electrifying, and just the boost many of us need to keep our energy up and our dedication renewed.
Oh, and special thanks to the CDC’s Act Against AIDS campaign for letting me take over their Instagram page during the conference (follow them here), and to Gilead Sciences for sponsoring the “Mind the Gap” session on social media and inviting me to host it.
I love what I do. I love the work you’re doing, too. As always, you are welcome to re-post my content, share it, take the YouTube video above and post it within your page, whatever might help share the messages of this amazing event and the awesome people who attended.
Thanks, my friends, and please be well.
(The photo above was the selfie the Social to Mobile speakers took at the end of our session, and includes – left to right – YouTube star Davey Wavey, blogger Guy Anthony, Michelle Samplin-Salgado of AIDS.gov, Luvvie Ajayi of the Red Pump Project, Miguel Gomez of AIDS.gov, myself, and Michael Crawford from Freedom to Marry.)
Tags: advocacy, aids, conferences, criminalization, culture, gay, help others, hiv, physician, politics, PrEP, recovery, research, serosorting, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 6 Comments »
Thursday, April 9th, 2015
Michael Weinstein, the polarizing and famously litigious head of AIDS Healthcare Foundation (AHF) just got a taste of his own medicine when a stunning Whistleblower lawsuit against AHF filed last year was unsealed and made public.
The 34-page suit, brought by three former staffers who claim they were fired when they raised questions of financial impropriety, charges the agency with ten counts of defrauding the government, conspiracy, and a “multi-State kickback scheme” to maintain service quotas and keep the government-funded gravy train rolling.
In exclusive interviews with My Fabulous Disease, one of the plaintiffs, Jack Carrel of Louisiana, his lead counsel Theodore Leopold, and several prominent figures in the HIV arena spoke out about the details of the charges and what the lawsuit could mean for the beleaguered head of the country’s largest provider of HIV clinical services.
A “CRIMINAL EFFORT”
The plaintiffs accuse AHF of an “organizational-wide criminal effort” across at least 12 States in the form of kick-backs to AHF clients and staffers. They believe that AHF has defrauded governmental programs out of tens of millions of dollars, based on their own experience with the agency going back to at least 2010.
The three plaintiffs, all former managers at AHF who were in a position to be familiar with agency policy, also include Mauricio Ferrer of Florida and Shawn Loftis of New York.
When someone tested positive in an AHF clinic, the suit claims, they were offered cash or other inducements to be linked to care in AHF clinics. Furthermore, AHF staff were provided commissions when they successfully linked someone with a positive test result to AHF services. This procedure was developed first in Los Angeles and then spread across all States where AHF has a presence.
The policy wasn’t exactly clandestine. In fact, it was written right into the “AHF Linkage to Care Training Manual” included as an exhibit in the lawsuit (partial snapshot below).
This kind of incentive is flagrantly illegal. Defying the Federal Anti-Kickback Statute is a felony offense. Grant monies received from the government, such as through the Ryan White CARE Act, CDC, or other HHS programs like Medicare, strictly forbid kickbacks.
The Anti-Kickback Statute ensures “there are no behind-the-scenes shenanigans for profit reasons,” said lead counsel Theodore Leopold of Cohen Milstein, the firm representing the plaintiffs in the case. “The Federal law is quite clear. We want to be sure the clients are getting proper care and treatment.” Medical decisions should be for the betterment of the patient, Leopold said, “and not to put money into AHF’s pockets.”
“This case is about AHF gaming the system,” Leopold said. He explained that kickbacks “can lead to an over-utilization of services, corrupt the process, and exploit the population most in need of services.” The suit claims that although AHF was formed as a not-for-profit agency, it “exhibited a for-profit corporate mindset and a voracious appetite for any and all revenues associated with HIV patient referrals.
“We are seeking monetary recovery on behalf of the government for funds,” Leopold said, which the suit contends were billed through improper means.
ONE PLAINTIFF SPEAKS OUT
Jack Carrel holds a Master’s Degree in Public Health and is working on his doctorate. He came to AHF in 2012 after working in the HIV field for nearly 30 years. He is also HIV positive and feels a strong connection to those testing positive and seeking services.
As Director of Public Health for AHF’s Southern Bureau, Carrel questioned the financial incentive policy that directed people who tested positive into AHF clinics, but was “assured it was perfectly fine,” Carrel said. “And then when we had meetings with funders, other (AHF staffers) in the meeting would tell funders that we would invite clients to use any other clinic they wanted, and I knew that wasn’t true.” Carrel was fired after objecting to the “linkage to care” policy.
“I tried to do something about it and I wasn’t able to,” Carrel said. “I’m HIV positive and I work in this field. I want people to be in care and to achieve viral suppression. But this system didn’t give clients the choice for getting services where they wanted.”
People who have just received HIV positive test results are often in shock, emotionally vulnerable, and susceptible to nearly any suggestion. AHF staffers were financially rewarded for influencing their clients’ healthcare decision-making, according to the lawsuit. They allegedly plied clients with money, free fast-food lunches, and rides directly to AHF clinics.
Attorney Leopold is careful to point out that this is a civil matter and not a criminal one. A tepid statement released by AHF in response to the suit contends they did “nothing wrong” and use as proof of their innocence the fact that the government has declined to intervene in the legal action.
The mere fact the government has not, as of yet, chosen to intervene “is no reflection on the validity of the case,” contends Leopold, citing that this is not uncommon when there is already outside counsel involved. In other words, the government may be more than happy to allow this lawsuit to do the legwork for them and then use it to build a case for later criminal charges.
“WE WILL SUE YOU!”
The lawsuit places much of the responsibility for the AHF scandal squarely at the feet of Michael Weinstein who, at a 2013 AHF Leadership Summit, personally advocated for increased “positivity rates,” more linkage directly to AHF services, and “the payment of financial incentives to patients for the purpose on inducing self-referrals to AHF medical care,” according to the suit.
The irony of the Whistleblower action is the rich history AHF has of threatening others with litigation. Under the direction of Weinstein, AHF participated in their own, profitable Whistleblower lawsuit against Bristol-Myers Squibb in 2010 and Weinstein has always used potential litigation toward others as a playing card.
(Weinstein has also engaged in expensive petitions to mandate condom use in porn, called the pre-exposure prophylaxis [PrEP] medication Truvada “a party drug,” and taken out full page ads that significantly misrepresent PrEP efficacy findings, all to the consternation of his peers.)
The animosity Weinstein has engendered among other HIV advocates can be traced back for decades. Sue Crumpton served as the director of LA Shanti, the first HIV support agency founded in Los Angeles, from 1992-1998. She remembers L.A. County planning council meetings “filled with drama, courtesy of Mr. Weinstein.”
“Michael never showed up to Planning Council meetings unless there was grant money on the table,” Crumpton said. “And then if things didn’t go his way, his first response was to say ‘we will sue you!’ The other agencies didn’t have the resources to respond to a lawsuit, so he would get his way.”
PrEP activist and former AHF poster boy Eric Paul Leue, who broke ties with the agency after Weinstein’s widely maligned objections to PrEP, has little patience with such tactics. “AHF has sued counties, cities, and departments of health, and has bullied smaller organizations into submission with litigation that real non-profits cannot afford to fight,” he said.
Leue relates the story of AHF attorney Samantha Azulay who, during a case in which AHF fought to have funding taken away from a small organization serving Los Angeles youth, stated that “maybe you’ve got to cut up a couple trees to save the forest.”
“That’s what it comes down to,” said Leue, who began a #RemoveWeinstein petition last year. “AHF leadership is the forest and they do not care about the community. They care about their bottom line of one billion dollars per year.”
Weinstein’s litigious nature and the sheer size of his agency intimidated plaintiff Jack Carrel and gave him pause when considering what to do about the policies he knew to be wrong. “AHF is a very big organization,” Carrel said. “And I’m one HIV educator. So that was, and still is, scary.”
“A THUG AND A CROOK”
Weinstein’s battles with HIV advocates and agencies have largely marginalized him from HIV advocacy circles, where he is derisively known as the Tea Party of the HIV movement.
Lifelong HIV activist Peter Staley (How to Survive a Plague) believes the legal fallout from Weinstein’s actions is long overdue. “For those of us who have been fighting Michael Weinstein from day one,” he said, “when he started ignoring the great legacy of science-driven AIDS treatment activism, this lawsuit couldn’t have come soon enough. And yes,” he adds, “it feels like payback.”
Long term AIDS survivor Michael Petrelis, whose own blog The Petrelis Files is best known for holding HIV service agencies accountable by publishing their IRS 990 forms, has long criticized AHF for failing to post its 990 on their agency website.
“It’s possible the charges in the lawsuit are just the tip of the iceberg,” Petrelis said. “Since AHF is a behemoth with national and global offices – not to mention lobbyists in Washington – and negotiates directly with drug manufacturers among its various endeavors, there should be an AHF Watch Network… keeping a close eye on the organization, its Board and executives.”
Peter Staley is already writing Weinstein’s professional obituary while remaining concerned for the well-being of thousands of AHF clients. “We knew Weinstein was a thug and a crook,” he said, “but his downfall will be bittersweet, because it could also bring down the empire he built, which includes lots of HIV/AIDS specialists and thousands of low-income patients.”
“If I were on the AHF Board,” Staley adds, “I would quickly clean house. All of this can be set right once Weinstein is gone, and AHF can live on under new management.”
Plaintiff Jack Carrel thinks that, were something catastrophic to happen to AHF, “other agencies would step up” to fill the needs in service. And when asked if Weinstein deserves to keep his job, Carrel will only say that “when you’re CEO of an organization, you are responsible for what it does.”
Removing Weinstein may actually become an imperative for the AHF Board, Sue Crumpton believes.
“Michael always cultivated his own Board, which acquiesce to his whims, and he has always served as its Chair,” she said, “but those other Board members also have a fiduciary responsibility to the agency. They could be held personally liable for this lawsuit. A Board can be ensured against many things, but negligence is not one of them. If they don’t seek to remedy this situation, in my opinion, they are negligent.”
For his part, lead counsel Theodore Leopold isn’t particularly shocked by the alleged unlawfulness of AHF policy. “I’ve been doing this a long time,” he said, “so not too many things, as it relates to corporate greed, surprise me.”
(Photo credit of Michael Weinstein: Mitchell Zachs/AP)
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Tuesday, February 17th, 2015
My fear of all things anal began when I was an early teen. My older brother David took great delight in bursting into our bathroom to startle me, especially if I was on the john. And, since I was a pubescent redhead, his sudden visits included a lot of laughing and pointing.
I was mortified beyond belief. To this day, I must be sure no one is in the house, and then close and lock the bedroom and bathroom doors before I can properly relax. And I live alone.
But you can’t avoid everything anal if you’re growing up gay. Not if you want to do the really fun stuff.
I discovered soon enough that if someone had serious intentions in regard to my backside, I couldn’t simply rely upon a bran muffin and a Hail Mary to be properly prepared. God forbid I would, you know, not be… well, you know. This ongoing fear had a habit of wrecking the mood and the evening.
My exclamations during sex were usually panicked calls to turn the lights up, so I could carefully inspect the situation. Or a plea to stop altogether. “Okay, that’s fine, no wait!” I would cry out. “Am I okay down there? I mean, is it… okay go ahead… no hold on! Are you sure I’m…?” I was usually so involved with my protestations that I would hardly notice my date gathering his things to leave.
There are cleansing products meant to address this situation, but they require a certain comfort level with your own body and a little patience, meaning, they were incomprehensible to me. But I tried my best.
Drugstore enemas always felt too clinical, like something a nurse should be administering so you could “move your bowels,” a phrase I hope I never have to hear again, much less type.
But never fear. Leave it to gay men to popularize the “shower shot,” a long hose which screws into your shower head and ends in a narrow nozzle, just right for sliding up your bum for a thorough internal rinse.
The modulation of this instrument, however — and I cannot stress this enough — is of utmost importance. Too little water pressure and you’ve got a dribble with little cleansing effect. Too much, and you’ve just inserted a pressure washer into your ass that could peel the paint off a building.
I was first introduced to this contraption in my early twenties, when my first-time date invited me to visit the bathroom to “rinse out” while he relaxed in bed and waited. I stepped in the shower and surveyed the dangling metal hose. I turned on the water. I considered how it all might operate, and I made my best guess, standing there for God knows how long, hose inserted and whistling a happy tune.
I must say in my defense that no one had ever explained the device to me, much less how to gauge the input versus the output.
That poor, unfortunate man. He had really pretty designer sheets, covered with a gorgeous blue and white pinstripe blanket that I can still see clear as day. Such a lovely bedroom. That is, until a few passionate moments later, when all of it was soaked with a solid gallon of spoiled water that had been percolating in my poopchute, exploding from me in a streaming rush that looked like the wake of an outboard motor hurtling across Lake Erie. The word “apocalyptic” comes to mind.
Only as I matured did I realize I had options (and I will now introduce cute baseball analogies to illustrate my point). I discovered I did not, in fact, always have to play catcher, and I stepped onto the pitcher’s mound with great enthusiasm. But as much as I enjoyed the view from above, I worried still, that maybe I wasn’t holding up my end of the bargain. It was only after pitching a near-perfect game one day that my partner in the dugout helped me make a simple decision.
“Mark,” he said. “Why don’t you just stick to what you do well?” And it was this generous assessment that gave me the confidence to hang up the hiney hose forever.
Yes, that’s right. I’m now a dedicated top. I’ll allow you a few moments of incredulous wonderment.
What’s even more amazing is my having a boyfriend who is not only loving and adorable, but absolutely expert at the exotic mysteries of booty sex preparation. It really is an impressive talent, if you ask me. Like walking on your hands, or spinning plates on sticks.
This is all to tell you, dear reader, that sometimes you must find solutions to your fears in order to take care of yourself. And sometimes you have to face your damn fears head-on. I was reminded of this recently when, at fifty-two years old, I had my first colonoscopy. I don’t think I have to explain my anxiety level going in to this procedure.
Everything checked out fine, thanks. I had heard the anesthesia they give you can produce some odd behavior, but other than proposing to the physician and asking the recovery nurse if they located my pet hamster, I behaved myself quite admirably.
The only side effect of my colonoscopy was a bloated feeling and a case of the gurgles. Well, and a few hours later I had the longest, most continuous release of gas I have ever experienced in all my days. I’m talking a minute plus, people.
I really wish my older brother David had been here. He loves that kind of thing.
(Artwork courtesy of Andrews’s Anus, via LifeLube. This piece was originally posted on my blog in January of 2013, but for some reason continues to be one of the most popular pages on this site. So don’t say I’m not giving the public what they want!)
If I can face my deepest fears, so can you. Did you know that studies show people living with HIV have a higher incidence of “colonic neoplasms” (the polyps they are looking for during a colonoscopy), which should be checked out for cancerous cell growth? Anyone aged 50 should get a colonoscopy, and some protocols suggest that people with HIV start this screening at age 45. Please don’t delay. Call your doctor! (At right, a picture of my happy procedure team just prior to my colonoscopy.)
And speaking of rectal douching (and why not? We really should discuss this topic more, considering it is such a common practice among gay men), I cannot say enough about LifeLube, the blog created by the AIDS Foundation of Chicago to help gay men address sexuality and their bodies. They have an entire section devoted to rectal douching (did you know there are new douches that limit the amount of healthy bacteria removed?) and another feature, Andrew’s Anus, that provides engaging answers to the questions you’re afraid to ask. The blog is no longer active – meaning, no new postings – but there is a wealth of information here and you should definitely check it out.
Tuesday, January 6th, 2015
They come from different cultures and regions of the world, but these fifteen HIV activists all share one important trait: a fierce devotion to HIV issues and a commitment to leave their mark on 2015.
Their advocacy has been noticed by some of the most prominent people in the HIV arena, so it seems fitting to allow some leading advocates to weigh in on each member of the list.
Load these advocates onto your Twitter feed or follow them on Facebook, and keep a close eye on what they have in store for the new year. If you are working in your community to make life better for those with HIV or to prevent new infections, please consider yourself an honorary member of this group. Thank you for your work!
“Indigenous People are those directly descended from a land that they have no political power over,” says Marama Pala. “Asking for consideration as a vulnerable population reveals another layer of discrimination and racism that speaks to the overall injustice of being born indigenous.”
She could well be speaking of Native Americans, but Marama is talking about her experience as a New Zealand Maori, the first people of New Zealand.
Marama was the first Maori woman to publicly disclose her HIV status, and her bravery has resulted in her becoming a powerful advocate for Maori and marginalized people. She serves on a multitude of foundations and networks devoted to raising the voices of indigenous peoples around the world and has held key positions in the planning of the last several international AIDS conferences. Her influence in 2015 will be no different.
“For generations indigenous peoples have suffered a genocidal impact from diseases ranging from influenza to small pox,” she said. “HIV is a modern day scourge that is harder to fight because it involves sex – a culturally taboo subject.”
“Marama is the rare blend of spirit, passion, intelligence and outspokenness that is needed to advance the issues of women and indigenous cultures affected by HIV around the world,” said Brent Allan, Executive Officer of Living Positive Victoria, Australia’s largest organization for and by people with HIV. “She is an outstanding example of the heart and soul inherent in our sisters living with HIV.”
Writer and occasional bomb thrower Josh Kruger reveals himself through a fierce, revelatory prose that lays bare all that he is or has ever been. He began writing while in a homeless shelter in 2012, and has since shared his experiences with crystal meth addiction, living with HIV, and the perilous gay dating pool. His work has wit and intimacy, and he’s been known to infuriate readers. In other words, he is a writer that demands to be read.
His column, “The Uncomfortable Whole,” appears in the Philadelphia Weekly and addresses any number of social ills, such as drug abuse, HIV stigma, and homophobia. He has also written for The Advocate and HIV Plus Magazine, and blogs regularly as a gay man with HIV for TheBody.com.
Too often, writers dealing with their own HIV infection temper their feelings or paper them over with political correctness, which is why Josh Kruger is someone to keep watching. This is not a writer who second guesses himself.
“Josh is a rare talent,” said Mathew Rodriguez, the community editor of TheBody.com who is making his own splash through his PrEP advocacy and his essays on race and gay community. “Josh’s writing seems almost contradictory — sharp yet breezy, challenging yet easy to read, hungry yet nourishing. He is unabashedly opinionated, and the best part is that we have only just seen him begin to stretch his skills writing about HIV. What will we see next? I’m not sure, but my attention is already rapt.”
“My role can best be described as an agitator,” Tommy Luckett says, and that’s quite a statement coming from an openly HIV positive transgender woman living in Little Rock, Arkansas. But Tommy’s passion and growing voice defy simple geography. She serves on the board of the Arkansas Transgender Equality Coalition and the health department’s Quality Care Advisory Board, yet still has time to advocate against Arkansas’ HIV criminalization statutes.
Tommy gracefully rejects stereotypes about transgender women. “I was in a relationship when I contracted HIV from my partner,” she said. “A common misconception is that trans women place themselves at high risks of contracting HIV by doing sex work and that’s not always the case. In order to have shelter, some trans women are forced into sex work.” Tommy doesn’t judge women making desperate choices, and even advocates for their safety and well-being. “Being caught with a certain number of condoms is against the law in some states,” she said. “In essence, the laws are contributing to the spike of HIV cases in the transgender community.”
Cecilia Chung, a leading transgender activist who serves on the Presidential Advisory Council on HIV/AIDS (PACHA), is a big fan of Tommy’s growing influence. “In the HIV sphere where voices of trans women living with HIV are most under represented, I am inspired by emerging leaders like Tommy. She brings a transwoman of color perspective from the southern states and a personal story that reflect the current landscape of the epidemic.”
Some consider him the best kept secret in HIV treatment activism. James Krellenstein has presented to the FDA and the CDC, mapped strategy alongside iconic activists, and become a respected voice within ACT UP New York City. What makes his growing influence all the more remarkable is the fact that James is 23 years old.
James recently spearheaded a successful campaign to convince the FDA to approve the Alere rapid HIV test (which can detect HIV sooner and more accurately than other tests) for use in non-laboratory settings like bars, clubs, or your local gay pride festival. The effort illustrates James’ dedication to improved HIV surveillance and greater funding and access to effective HIV prevention tools.
James co-founded ACT UP New York’s Prevention of HIV Action Group (PHAG) and regularly collaborates with Mark Harrington, the director of Treatment Action Group and no slouch in the brains department himself.
“James represents the future of AIDS treatment activism,” said prominent ACT UP member Peter Staley, who was profiled in the Oscar nominated documentary How to Survive a Plague. “This movement’s greatest legacy is a willingness to let science drive our health justice agenda. James reminds me of a young Mark Harrington or Spencer Cox – one of those rare wiz kids with a complete lack of intimidation about becoming the activist expert even the Anthony Fauci’s of the world admire.”
It can be disheartening to simply live as a sexually active gay man with HIV, and Australian Nic Holas doesn’t want to just counter that stigma. He wants to smash it. As a writer and activist, Nic co-founded The Institute of Many, a social support network of people living with HIV, and has spoken with fierce transparency about navigating the sexual landscape of the gay community.
Nic has made countless appearances on national television, documentaries, radio and online discussing HIV and is also a peer educator, an ENUF Ambassador, an ENDING HIV ambassador, and a facilitator for the Positive Leadership Development Institute Australia. And he’s just getting warmed up.
In 2015, Nic plans to continue to grow The Institute of Many, and deliver a challenge to its growing membership to take action on advocacy efforts.
“Nic represents a new generation of smart HIV activists who neither feel apologetic about their status nor want to use it to buy into a sex negativity which would deny the particular thrills and experiences of being a gay man,” said Dennis Altman, Professorial Fellow in Human Security at La Trobe University and author of more than a dozen books, most recently The End of the Homosexual? “This year, Nic emerged as a formidable spokesperson for people who are positive, and, equally important, as someone who reminds us that social justice demands concerns for more than those in our immediate tribe.”
Of all the various populations of people living with HIV, it’s ironic that none may be as misunderstood as those who have faced HIV stigma since the hospital delivery room: those born with HIV. Los Angeles children’s advocate Grissel Granados hopes to change that.
Grissel is looking forward to the completion of a documentary she has produced, We’re Still Here, that focuses on her journey trying to make sense of her experience as a young adult born with HIV. She believes the project can help other people find community where there wasn’t one before. “For the first time on screen,” says Grissel, “people who were born with HIV are telling our stories in our own words and on our own terms.” The trailer for the film was just released.
Her own life circumstance has clearly informed her work at Children’s Hospital Los Angeles, where she works in the Division of Adolescent and Young Adult Medicine, and Grissel intends to use her new seat on the President’s Advisory Council on HIV/AIDS to take on health disparities among youth and young adults.
“Grissel is a fierce advocate who leads from the heart,” said Naina Khanna, the influential director of the Positive Women’s Network USA. “She is a skillful bridge builder that finds connections between complex issues – ranging from immigration to sexual rights and HIV. I am really excited to see where Grissel’s future will take her.”
When Kerry Thomas addressed the “HIV Is Not A Crime” conference in Grinnell, Iowa in 2014, he did so via a phone call from his prison cell in Idaho. And his remarks held the attendees spellbound for nearly an hour.
Kerry is presently serving 30 years for “HIV non-disclosure” (or not telling his sex partner he is living with HIV) even though he used condoms, had an undetectable viral load, and did not transmit HIV. His case has become a rallying cry for advocates around the world, and Kerry’s grace and humility under extraordinary circumstances have only increased his profile.
“Kerry has demonstrated courage, strength and leadership from behind the walls of prison,” said lifelong activist and author Sean Strub, founder of The SERO Project, a network of people living with HIV working to reform HIV criminalization statutes. “He is committed to justice for everyone unfairly prosecuted because of their HIV status, even as he struggles to find justice for himself.”
Kerry has a hearing in March on a motion for post-conviction relief. If he has been this inspiring from behind bars, just imagine his effectiveness as a free man.
A year ago, Ken Almanza might never have believed he would find himself interviewed by a television station in the Netherlands or appearing on the front page of the Los Angeles Times. But the rising activist’s engaging and personal video blogs about beginning PrEP (pre-exposure prophylaxis) has endeared him to advocates everywhere.
The social repercussions Ken experienced because of his blogs about PrEP haven’t slowed him down. He has taken on a new role at APLA Health and Wellness with their Crystal Meth Harm Reduction program – another focus of advocacy for Ken, who produced a film about his brother’s battle with addiction and the effect it had on his family. Now, APLA Health and Wellness has plans to incorporate PrEP education into their crystal meth program, which would combine two crucial issues that are important to Ken.
“Very few leaders can bridge the gap between intelligence, activism, and sheer magnetism,” said Damon L. Jacobs, a nationally recognized PrEP advocate and therapist in New York City, who believes that Ken has a “passion for breaking the glass ceiling against imposed limits on sexual education, personal freedom, and gay Latino expression.”
BENJAMIN T. Di’COSTA
When Benjamin T. Di’Costa saw the treatment a transgender friend received while in the hospital last year, it changed him forever. Benjamin, 24, stayed by his friend’s side and witnessed a real lack of trans-competent care by medical providers. The experience only bolstered his commitment to the rights of transgender people.
Demonstrating empathy for others is nothing new to Benjamin, who is HIV negative and has worked as a Youth and Transgender Specialist for Latinos Salud, the largest minority HIV/AIDS organization in the state of Florida.
Along the way Benjamin has raised his voice as an HIV negative cisgender bisexual male by creating posts and videos for The Poz+ Life, a site devoted to sharing what it is like to be affected by HIV and other disparities. His social media (and selfie) skills are first rate, and Benjamin’s voice will doubtlessly grow stronger in 2015.
“Benjamin is one of the most promising young advocates on the scene,” said Jack Mackenroth, the reigning king of social media who just had another triumph with his #WeareALLclean HIV stigma campaign. “He has a real humility about him, and his willingness to reach out and understand other communities is exactly the kind of thoughtful engagement that brings people together. Too many of us focus on our differences, and Benjamin shows that there is a better way.”
In the city of Midrand Gauteng in south Africa, Yvette Raphael stays busy running her catering company. “I do it because I love making people happy and every meal is prepared with love,” she says. Love is also something Yvette shares generously with her extended family, including three young girls living with HIV for whom she serves as guardian and mentor.
None of these responsibilities, though, have kept her from becoming an emerging voice for women living with the virus.
Diagnosed with HIV in 2000, Yvette contributes to a number of national and global efforts, including working in support of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the Campaign to End AIDS, and serving as a 2014 AIDS Vaccine Advocacy Coalition (AVAC) Fellow associated with Johns Hopkins University. Her influence is growing faster than a baking souffle.
“Yvette is a rare breath of fresh activism in a time in the AIDS movement that needs more advocacy and policy change, not less,” said Dazon Dixon Diallo, founder of Sisterlove and one of the preeminent global voices for HIV among women. “She comes to the movement with a fierce brilliance and a fearless voice for women, youth and the African LGBTQ community. Yvette is a young, single mother who works hard to defend and protect the human rights of all, especially young girls. She rocks on all fronts!”
ERIC PAUL LEUE
Few people can hold a conversation about their leather man titles and Tenofovir disoproxil fumarate drug levels at the same time. But that’s exactly what you get with Mr. Los Angeles Leather Eric Paul Leue, a self-motivated transplant from Berlin who has been able to generate great conversations (and often controversy) around kink, sex, PrEP, pleasure, and science.
Eric famously broke ties with the AIDS Healthcare Foundation, for whom he had been featured in an HIV testing campaign last year, when the director of the agency stated his (widely maligned) objection to PrEP as a prevention tool. Since then, the current Los Angeles Mr. Leather has put his activism into overdrive, even creating a petition to have the director of AIDS Healthcare Foundation removed.
When discussing PrEP, its side effects and efficacy, the devil is the details and Eric knows nearly all of them. His easy going style during public events — including a discussion about PrEP with at least one skeptic at a 2014 World AIDS Day forum in Palm Springs – demonstrates that Eric can find common ground and show respect for those who don’t share his views entirely. For a topic rife with conflict and antagonism, that is no small feat.
“In his twin roles as Director of Sexual Health and Advocacy for Kink.com, Eric has expanded his HIV prevention efforts into the underserved communities of kink and leather,” said author and quintessential leather man Guy Baldwin, M.S., who was inducted into the Leather Hall of Fame in 2012. “The world of radical sexuality is lucky to have the force of nature that is Eric Leue.”
(Photo credit: Eric Schwabel)
If you did not vote in the last midterm election, don’t mention that to Tony Christon-Walker. You’ll get a passionate lecture on why local and state elections are actually more important than presidential ones. And make no mistake, the man knows what he is talking about.
Working as a Civic Engagement Coordinator for AIDS Alabama, Tony understands firsthand the damage state politics can do to those living with HIV. He has seen Alabama, one of our poorest states, refuse to expand Medicaid, effectively denying health insurance to those who need it most (of the estimated four million people who fall within this coverage gap, the vast majority are in the South). Tony devotes his energies to getting people registered, restoring the voting rights of ex-felons, and making sure you know that every election matters.
Advocacy has been a lifelong pursuit for Tony, who once learned Spanish just so he could communicate with his clients at AIDS Alabama more effectively. In 2015, the newly married advocate will be working to create coalitions among those who are engaged in political efforts – immigration, HIV, healthcare reform – that are closely aligned.
“I’ve watched Tony with a sense of admiration and awe for a number of years,” said Kathie Hiers, a fellow Alabamian who serves as president of the National AIDS Housing Coalition. “He exemplifies the very best of grass roots activism, and proves the adage that all politics are local. Thank goodness for Tony, because he is special.”
It is tempting to say that Marco Castro-Bojorquez is the hardest working advocate on the scene, but one thing is for sure: he is among the busiest.
Born and raised on the Mexican Pacific coast, Marco left his country for political reasons and has lived in California for the past 20 years. And he hasn’t exactly been wasting his time. Marco is a community educator at Lambda Legal, the oldest and largest national legal organization committed to achieving full recognition of the civil rights of LGBT people and people with HIV. He has taken particular interest in the plight of immigrants and migrants living with HIV and has begun plans to create a support network for them.
Somehow, Marco has managed to create several short documentaries in his spare time, including the upcoming El Canto del Colibri (“The Hummingbird Song”), a film about Latino fathers dealing with having an LGBT member in the family. It will premiere in 2015 and was inspired in part by a pilot family acceptance program he has led at Lambda for the last three years.
“Marco is such an amazing individual,” said Bamby Salcedo, President of Coalicion Translatina, a national advocacy organization serving trans Latina immigrants living in the United States. “He just helped me organize a protest about violence against trans women of color. What drives Marco is his passion for the betterment of everyone.”
Growing up on the hard scrabble streets of Detroit, Guy Anthony had no role models around him as a “black, slightly effeminate gay man,” he says. And that’s what his growing advocacy voice has been all about. The young activist and author (Pos(+)itively Beautiful: A Book of Affirmations, Advice & Advocacy) wants to provide the kind of compassionate guidance to others that he never had.
Guy facilitates the only support group for young, HIV positive black men in Washington, DC. It’s one of his duties as a treatment adherence coordinator at Us Helping Us, an agency addressing the needs of gay men of color. The agency has become a hub for HIV treatment, prevention, and mental health services.
Mental health is something Guy intends to move to the forefront of his efforts in 2015, and he begins the year with a splash by speaking at the National AIDS Education and Services for Minorities conference in January. He is convinced that mental health services are critical to those who test positive or are at risk, and wants to make it synonymous with case management.
“It’s exciting to see Guy included on this list,” said Paul Kawata, director of the National Minority AIDS Council and the longest serving national HIV agency head in the country. “He’s a poised, charismatic young man who has accomplished a multitude of things, and he’s not even 30! Guy is surely one to watch in 2015.”
This young, brilliant German researcher is obsessed with t-cells, and thank goodness for that. As Chief of the Cellular Immunology Section at U.S. Military HIV Research Program, Hendrik Streeck is working to figure out how these important cells – which serve as the gateway to HIV infection – react during initial infection, and how they might be manipulated by a potential vaccine.
In other words, Hendrik wants to end HIV as we know it, by getting to the bottom of how t-cells work – and how a vaccine can prevent them from ever getting infected with HIV. It is a segment of HIV research that requires tremendous creativity and technical wizardry, and Hendrik is just one of many researchers leading the charge.
“Hendrik is unique among researchers in his ability to combine expertise in the basic biology of the virus with innovative HIV therapies,” said Nathalia Holt, a fellow HIV researcher and author of CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science. “In 2015 Hendrik will leading a new institute at the University of Duisburg-Essen in Germany dedicated to finding a cure and vaccine for HIV. We can expect big things from him this year.”
Tags: aids, barebacking, conferences, criminalization, culture, gay, help others, hiv, meth, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Thursday, October 9th, 2014
Tyler Helms won’t stop teasing his boyfriend during our video chat interview. He fiddles with Michael’s ear, or tickles his face, from his seat slightly behind him. No matter if Michael Lucas, adult film producer and PrEP user, is trying to make a point. The childish joy of a relatively new love is at play, and Tyler can’t help himself. It’s adorable and telling.
We’ve been meaning to conduct the interview for months, but they wanted time to enjoy their budding relationship before discussing it publicly. That bud is now in full bloom, it would appear. They are both open and approachable, allowing me to get away with a lot of very personal questions.
Yes, there is the prurient intrigue of Michael being a famous gay porn star, and how that impacts their relationship. But what truly interests me is the fact they are engaged in the most modern of gay romances. It isn’t simply because one of them is HIV positive and the other negative. It’s about what they are doing about it. Between them, they are practicing both of the most exciting developments in HIV prevention of the last generation. They’re an HIV prevention two-for-one.
“We’re taking our time,” Tyler says. But that’s not keeping them from spending nearly every night together and constantly keeping in touch.
Their love affair elicits some interesting reactions among their friends. Some of them patronize Michael, as if being in a relationship with a man living with HIV was an act of charity. “People say, ‘oh, good for you,’ as if it’s something special,” says Michael. He shakes his head. “I’m not performing an heroic act.”
“There’s a whole lot more that needs to happen in our community,” Tyler adds. He is a formidable advocate in his own right (he serves on the board of GMHC), but one whose visibility has risen further since his new relationship began. “We need to talk about the modern day face of HIV,” he insists.
Tyler was infected in 2007, and it came as some surprise. “I was tested every three months and was in a committed relationship,” he says. It is a common story, actually, because one of the leading risk factors of HIV infection is via a primary partner, such as a lover or fuck buddy.
Whatever the circumstances, Tyler is entirely at peace with it today. “I’m only on Atripla,” he says, “and it made me crazy for a few months. But now I’m better than ever and have been undetectable for two years.” Because Tyler is undetectable, research shows there is no real risk of transmitting HIV to his partner.
Treating people with HIV to reduce their virus to undetectable levels so they can’t infect others is known as “Treatment as Prevention,” or TasP, and it has become a major public health strategy since studies proved its effectiveness.
On a personal level, “HIV is really a moot issue between us,” Tyler says. The topic of HIV may be resolved between them, but that hasn’t kept them both from discussing their sexual choices and risk strategies in very public forums.
Michael has been using PrEP for some time now, and has bartered his notoriety to voice his strong beliefs about it. For that matter, Michael has strong beliefs about a lot of things, including his unwavering support for Israel. He even produced the mainstream documentary, “Undressing Israel: Gay Men in the Promised Land.”
“Oh yes,” Tyler interjects slyly when that topic, and the views for which Michael has been both heralded and vilified, come up. “Do ask about Israel!” He grins at the more serious Michael, and pokes him again. It’s hard to imagine anyone else who might get away with it, teasing Michael about his passions. But Michael takes it in affectionate stride and allows himself a grin of his own.
I turn to Michael’s profession and ask about it gingerly, as if it’s a careful secret or something. I really could use more experience speaking to porn stars.
“I’m used to being defined as a porn star,” Michael says easily. “I would not have the platform I have without that. My opinions would only be in the comments section. But I write under my own name, and I use my platform to discuss things I am passionate about. And I do my research.”
That research is evident in a number of articles Michael has authored about his use of PrEP, or pre-exposure prophylaxis through the use of the medication Truvada on a daily basis. Research shows PrEP is effective in preventing transmission into the high 90% range, and there is an enormous push among community advocates for the adoption of PrEP for those at risk. It sits alongside TasP as the other most promising HIV prevention strategy — one for those living with HIV and the other for those who are not — and Michael appreciates the piece of mind it provides.
“People ask me all the time, ‘are you nervous?’ People of my generation saw the dying and I was always scared of becoming HIV positive,” Michael says. “It was in the back of my mind all the time. So people ask that question, but it’s only because they don’t know the new data and research about PrEP.”
His taking PrEP, though, actually has little to do with Michael’s HIV positive boyfriend. “If I was only having sex with Tyler, I would not be taking PrEP,” Michael says simply. “I know there is no way for a person who is undetectable to transmit to me. I believe in science.”
Science aside, I have to ask Tyler how he feels about Michael occasionally stepping in front of the cameras for porn scenes. His response is without alarm or even a hint of jealousy. “I’ve never dated someone who does porn,” he says, “but it’s just not something I think about.” It does come with plenty of assumptions from others, however.
“The most misunderstood thing about us,” Tyler says, “is that people assume our relationship is purely sex-based. Some people don’t understand it. They think Michael must have sex constantly, which is untrue.”
“Most people I know have more sex than I do,” Michael interjects. “With Grindr, people can have sex nonstop. I can’t reach some of my friends anymore because they’re on Grindr getting laid.”
“Michael is rarely on set,” adds Tyler. “His main job is the corporation.” That company, Lucas Entertainment (NSFW), has become a leading adult film production outfit, and recently made the controversial change to produce gay porn without condoms, a reflection of Michael’s belief in other prevention methods like PrEP and TasP.
“I recommend and talk to my actors about PrEP,” he says. “I know a lot of people on it.” While Michael has been quoted as saying that porn, bareback or not, is a fantasy intended only to help men get off, he certainly hasn’t shied away from promoting options that make unprotected sex considerably safer.
So, somewhere along the road of their individual advocacy work, about a year ago, the two men and their respective prevention techniques ran across one another on Tinder, which seems almost quaint, and very of-the-moment. It wasn’t a hookup.
“I liked his profile,” says Michael, and he searches his phone and finds the wording of it. “It says he is ‘a loyal and kind friend, passionate and selfless about a few things here and there.’ There was maturity in that. No matter how much I’m attracted to someone, you have to be mature. That’s Tyler.”
They eye each other knowingly. “I believe it takes a lot of time to know a person,” Michael says finally. “Don’t confuse sexual attraction with real love.”
Two men, engaged in their own intimacies while allowing their sexual choices to be laid bare for all to see. It can’t always be comfortable for them.
It’s usually a fool’s errand to make assumptions about the private lives of public people, and the happy couple I have been watching in our video chat is no exception. You would probably get it wrong anyway, if you were to attempt to translate their public image — the advocate living with HIV and the opinionated porn star provocateur — into their authentic identities.
“I believe in love,” Tyler says, and he stops tickling Michael’s ear for a moment. He takes a look at the object of his new romance and smiles. “But I think Michael believes in love even more than me.”
There are few better ways to empower people with HIV than with political might, in any form we might acquire it. Michigan HIV advocate Todd Heywood is living with HIV and making a run for the Lansing Community College Board of Trustees, and I couldn’t be more excited about his candidacy. My friend Todd fully understands its impact. “By running as an out HIV-positive candidate, I am directly challenging stigma, and showing folks that HIV does not stop us from contributing to the betterment of our community.” If you happen to be in his community, he’s your man on November 4th. In any case, check out his web site and consider a little poz political contribution!
Tuesday, August 19th, 2014
When I moved to Los Angeles in 1981, my first job as a struggling actor was making popcorn at the Chinese Theater on Hollywood Boulevard. My encounters with celebrity was limited to serving Diet Cokes to the occasional sitcom star.
Until, that is, one day when I was hanging out in front of the theater browsing the cement footprints. A Rolls Royce pulled along at the curb, slowed by traffic. In the back seat, just feet from me, sat iconic star Carol Channing. She seemed as charmed by the famous movie theater as anyone else, and her enormous eyes took it all in, up and down, from her seat in the Rolls.
I was starstruck. And then, almost immediately, a compelling thought came to mind.
Her window is down, I considered. I could kill her. I could lurch toward that car right now and strangle her. It would only take a minute. But then I would be the guy that killed Carol Channing, and that would be awful. So I guess I won’t.
My boyfriend was understandably disturbed when I made this admission to him recently. He eyed me warily and it actually appeared that he moved back a step. Then he asked if I was watching too many horror movies. But to tell the truth, I get these fantasy compulsions all the time. Always have.
They’re not always homocidal, mind you. Sometimes they’re merely suicidal. I can’t stand high above ground without the urge to jump. Rooftop decks and tall stairwells get my imagination perculating, and I will consider the jump, the fall, and the aftermath. I even feel my muscles urging me to climb over the railing.
This aspect of my twisted psyche, at least, isn’t uncommon. Studies show that the urge to jump is shared by a great many of us, and one particularly comforting study suggests that this compulsion is actually an indication of our strong will to live. By confronting the urge and then deciding against it, we are confirming that life is better just as it is. So, I’m not morbid at all, people. I’m fabulously alive.
Nevertheless, it was with some trepidation that I agreed to participate in a study for the National Institutes of Health (NIH) on cognitive function in people living with HIV. Would they find gruesome thoughts floating around in my brain? And more importantly, would they find my brain?
The NIH staff coordinator, Sally Steinbach, treated me with great care over two days of testing. I had to really psyche myself into spending 90 minutes in an MRI machine and, after the initial panic of being rolled into the barrel of the enormous device, I happily sang the entire score of the Broadway musical Gypsy to pass the time.
The second day was filled with memory games and “which one is not like the others?” tests. The NIH is careful to point out that these clinical research programs are not meant to offer any benefit to participants other than the pride of knowing you are making a contribution, although I was paid several hundred dollars for lending them my noggin.
You can participate in this study, too. If you live in the Washington, DC, area just contact the NIH Recruitment Office at (800) 411-1222 and ask for study number 13-N-0149. They have exhausted their allottment for travel from outside the area for this study, but visit their web site for other studies they are doing and you may find one that includes travel from elsewhere in the United States or that has satellite programs. They also have a site that can tell you about studies happening worldwide.
Complete medical and testing results are shared with your physician, although mine has been tight-lipped about the relative chances that I’m a complete psycho.
All I want to know is whether or not Ms. Channing is safe.
Wednesday, August 6th, 2014
In 1977, I ran for senior class president, hoping against hope that my penchant for wearing platform shoes and fellating men in my spare time might somehow get overlooked by my high school classmates in Bossier City, Louisiana. I lost that faith when my campaign signs throughout the school hallways were vandalized. As the student body arrived that morning we were greeted with the word “FAG” scrawled across the posters in red spray paint.
Trying to comfort me, our student counselor Mrs. Berry gave me some advice. “When you put yourself out there in a position of leadership, you open yourself up to… criticism.” She stumbled over her word choice, unsatisfied with it, but I knew what she meant.
Still, a dozen posters with “FAG” painted on them seemed a little harsh.
That lesson isn’t lost in the treacherous and very adult arena of gay sexual politics and PrEP (pre-exposure prophylaxis, or preventing HIV infection using the drug Truvada). Speaking up in favor of the prevention strategy often leads to being labeled as anti-condom or simply a barebacking slut. So much for the complexities of modern HIV prevention.
And then there’s the dark excesses of the internet age, in which people are symbols, hardly human at all, and serve only as place holders for a polarizing issue to be judged and dissected. It’s the contemporary version of red spray paint, obliterating the individual in favor of a single, cruel label.
One might expect Damon L. Jacobs, then, who has proferred himself to the world as a gay man using PrEP, to be a little bruised and resentful after two years of constant media exposure — and vulnerable to the name calling and labels thrust upon him. Nothing could be further from the truth.
Damon, who has spoken openly and sometimes explicitly about his sex life before and after PrEP to everyone from Huffington Post to The New York Times, takes the criticism and his accelerated celebrity all in stride. “It’s not personal,” he told me, referring to those who criticize the use of Truvada and his engagement in particular. “They don’t have any idea who I really am. Some anonymous people behind a keyboard do not matter.”
Instead, Damon believes we are in the midst of a community-wide teaching moment, so long as we do it carefully.
“We can’t underestimate the role of fear,” he said, suggesting his expertise as a New York therapist with a private practice. “For years, we have had to live a certain way by using condoms or die. Then suddenly things change. That’s where the attacks come from. Their belief system is threatened. I think attitudes are genuinely changing — the last year or so a lot of people have changed their views — but they have to go through a transition for that to happen. And they must be respected during that process.”
Although public scrutiny this intense is new for Damon, advocacy on behalf of gay men’s health is not. For years, Damon worked on behalf of an HIV vaccine trial, becoming a regular presence in the New York gay club scene to spread the word about enrollment. He continued the work even after opening his own therapy practice.
By the time the vaccine trial was discontinued in early 2013, Damon had been privately taking PrEP for nearly two years. After having heard about early, encouraging results of PrEP research — and facing the fact that he wasn’t using condoms as often as he once had — Damon talked to his physician and started taking Truvada independently long before it garnered FDA approval.
It was a prescient move on his part, but not a choice he had been discussing openly with the many gay men with whom he had been in contact through his vaccine work. A drag queen changed all that.
Damon had worked with her during his bar outreach about the vaccine trial, and when they crossed paths again he mentioned he was taking PrEP. “What’s that?” she asked. When he explained it, her face “just dropped,” he said.
“Why didn’t you ever tell me about this?” she asked him. “I just tested HIV positive.”
“No one was getting the message out,” Damon told me. “Not public health, not HIV organizations, not on social media. Nobody.” When Damon began a Facebook group about PrEP in July of 2013, the response was nearly immediate. “Things snowballed,” he said.
What followed has been a firestorm of newspaper, television and online coverage of PrEP, often using Damon as a personal illustration. By participating, Damon has had to discuss the most personal aspects of his sexual life, including his growing reluctance to use condoms consistently, being a receptive sexual partner for whom exchanging semen has meaning and, perhaps most heretical after a generation of fear and mortality, the importance of pleasure and satisfaction in our sex lives as gay men.
“Pleasure and death have been one in the same,” he said. “For so long, pleasure could only result in something tragic, rather than seen as something important and powerful. To challenge that belief system, we need to have patience and compassion and empathy.”
Transparency about our sex lives — as they actually are, in the real world — has always been key in understanding behaviors and crafting HIV prevention messages. Moral debates only benefit the virus. But Damon’s honesty has enraged many gay men for “promoting” choices that are viewed as irresponsible and even dangerous. He responds to those attacks with his usual calm and a unyielding personal philosophy.
“I’m a student of A Course in Miracles,” he says, referring to the self-help curriculum popularized by Marianne Williamson in the 1980’s. Williamson was also very active in the earliest response to AIDS in Los Angeles. “I’m here doing God’s work,” Damon says simply. “And that work is to promote love in this world. I don’t usually talk about this, but I want to help people reduce fear. Depression, drugs, suicide, and even attacks on me, they’re all manifestations of fear.”
Honestly, I had expected to find an advocate more battered than this one. I was interested in the toll such constant scrutiny might take on a man. But Damon surrenders only the merest suggestion of the challenges of such explicit and public honesty.
“Most of the feedback about my work around PrEP has been great,” he said. “But a lot of hate and aggression has been unprecedented. It’s not the level I am used to. But I can sleep. A lot of people who stand up for love are going to be attacked.”
My high school campaign posters, a painful memory some forty years behind me, came again to mind. And in the calm of Damon’s convictions, those signs, dripping in spray paint, began to lose a great deal of their damaging power.
Tuesday, July 29th, 2014
The AIDS2014 International AIDS Conference in Melbourne, Australia, proved to be as colorful and exhausting as I had anticipated. There was no lack of images in the gorgeous city to share in my daily video blogs, and that included the faces of countless advocates from around the world.
My deep thanks to my friends at TheBody.com, who sent me to the conference and for whom I created exclusive content of the event. My Fabulous Disease was born on their site and it is a real gift to continue a collaboration that spans nearly twenty years.
My gratitude, too, to my new Aussie mates at Living Positive Victoria, an impressively active and engaged organization of people living with HIV/AIDS. They welcomed me warmly and were indispensable in providing guidance and access to a multitude of events.
Follow the links below to view each video at its home on TheBodyPro. Here’s a breakdown of each video episode and a little background on each.
Video #1: At MSM Global Forum, the Shock of Tragedy and the Road Forward
No one could have foreseen that the conference would begin in tragedy, as news of the crash of Malaysia flight MH17 circulated among delegates just as we arrived in Melbourne. Initial reports that more than 100 delegates had perished proved to be untrue, but the sting of loss was deeply felt nonetheless. At the pre-conference event sponsored by The Global Forum on MSM and HIV (MSMGF), emotions were high as prepared remarks were tossed in order to deal with the unthinkable events.
My own preparations for the day were jostled as well, because I knew my usual lighthearted reporting had no place among the broken hearts in the hall. I focused instead on the impact of the tragedy and how MSMGF had dealt with the events in the previous hours. And then, as we have come to know so well in the last 30 years, we soldiered on in memory of those no longer with us. A difficult day, even with the inspiring work that was presented.
Video #2: Criminal and Mannequins, Both Fighting HIV Stigma
The next pre-conference event, Beyond Blame, focused on the international issue of HIV criminalization. I have covered this topic before as it relates to the United States but it was awesome to see the international community at least as engaged as we are. Expert Edwin Bernard weighed in on breaking news from the US, while the inspiring Laurel Sprague puts the issue in context of women and power struggles.
Strolling the streets of Melbourne revealed a city very engaged in the conference, with bus signs and art installations everywhere. Wait until you meet Madam Kim of Positively Fabulous, who has funneled her “obsessive behaviors” into a hot pink avalanche of awareness and art that shines a light on women and HIV. You’ll also see reminders that the plane tragedy was still very much on the minds of the conference and the still-mourning city.
Always one of my favorite events of the international conference, this video drops you smack in the middle of the march and allows the passionate advocates to tell you exactly why they are there. It’s the first time in my video coverage you get to meet so many of the international delegates face-to-face, and they do not disappoint. You’ll be cheering for them!
The Candlelight Vigil following the march took place in one of the most gorgeous pavilions I have ever seen, in downtown Melbourne. Because of my own issues with grief and loss – I’m one of those people that is afraid that if I start crying I may never stop – I reached out to delegate and psychotherapist David Fawcett about the nature of grief and why it is important to express these feelings as a community. His insight provided the perfect context to my footage of hundreds of people who had come to mourn the loss of so many over the years – and those who perished in the plane tragedy only days earlier.
Video #4: One World, One Place, Thousands of Voices: The Awesome Advocates of AIDS2014
With countless global advocates convening in Melbourne, there is no shortage of impassioned voices. I realized soon enough that they needed little prompting from me, so I simply turned the camera on them and let them go for it. The result is a montage of voices, ringing out against all the ism’s of our modern world when it comes to HIV.
My new friend from Nigeria, who risks a decade in jail simply for providing services to gay men, sounded a truth that still rings in my ears. “We cannot let them die simply because of who they love,” he told me simply. Watching him celebrate at a dance party a few days later, in the safe company of his fellow delegates, told me everything about the resilience of our basic humanity, and how stubborn a thing like joy can be.
Video #5: Activist Theater, Condom Tryouts, and a Mystery Man Revealed
There’s no way I can produce these video blogs alone. It’s true that I operate on little sleep because after a full day of events I repair to my room to begin editing, a process that takes most of the night. But getting that footage in the first place means depending upon a camera man and assistant that shadows me day and night, maintains the schedule, and generally keeps me sane and laughs at my jokes.
Through Living Positive Victoria I found my professional dream date: Theodore, an Aussie from Sydney that had the perfect blend of patience, organization and good humor. He also happens to stop traffic with a towering physical presence and a smile that melts everyone, gay and straight, in his path. “Your camera man is so hot” became a running joke of the week.
Fortunately, I got to know the very heart of the man, and I’m much better for it. In this video, which takes you behind the scenes of theater being performed about HIV in Melbourne among other gems, I turned the tables on Theo and surprised him by getting him on camera for a change. You’re welcome.
Thank you, my friends, for the privilege of bringing the sights and sounds of AIDS2014 to you. I am deeply grateful for the opportunity, and hope the coverage provides just a glimpse of the spirit of the conference.
As always, thanks for watching, and please be well.
Tags: aids, barebacking, conferences, criminalization, culture, gay, help others, hiv, Recreation, research, Sexuality
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