Posts Tagged ‘barebacking’
Friday, January 23rd, 2015
For twenty-five years I have been writing about living openly as a gay man living with HIV. Along the way I have spilled secrets, opened up about sex and relationships, highlighted the work of those who inspire me, come clean about my history of addiction and recovery, focused my video camera on international conferences and the lives of HIV negative gay men, and have found myself in some hot water once or twice.
Living out, loud and proud is an enormous privilege I don’t take lightly. There are countless people who don’t have supportive families or understanding workplaces or even friends to whom they can rely. And it is those people who are most often on my mind as I write this blog. Your comments and emails inspire and humble me, and that includes the criticism of my admittedly strong opinions. You make me think twice, very often after the fact, and you can be assured that you teach me.
So my nomination for Outstanding Blog as part of the national GLAAD Media Awards has me excited, flummoxed and feeling reflective. I wouldn’t be a good recovering addict if somewhere in my mind I didn’t feel unworthy. Like many of us living with a shame that never truly washes away, there is a part of me that feels like a fraud.
If you only knew me, it whispers, you wouldn’t accept me. You wouldn’t give me an award. Maybe you wouldn’t love me. It is the sad reverberation of growing up gay, of feeling socially damaged by HIV, of the guilt of having once turned to drugs to block my doubts and fears.
Today, I will not be bowed by misgivings and undeserved shame. I will even indulge my dangerous ego and admit that I’m terribly proud and feel like one of the Oscar nominees I track with religious verve. And that is the simple, elegant value of efforts like the GLAAD awards. They remind us that we’re okay, celebrated even, and it chips away at the internal homophobia we carry with us in quiet places.
The fact that the highly visible GLAAD Awards focus most notably on film and television depictions of LGBT people makes this situation all the more unreal. The glamour of it all appeals to every gay bone in my body.
Will there be a red carpet? Can I lose enough weight to walk it? Can I convince openly HIV positive fashion designer Mondo Guerra to lend me a jacket (I’m working on it)? Can I make a statement about how those of us living with HIV are crafting lives of joy and engagement and responsibility?
It might be more productive to shift the focus away from myself and share with you the other nominees in my category. They surely deserve that. GLAAD does us all a great service by bringing art and resources to our attention that may be unfamiliar to us. I’ve been stalking the other nominated blogs below and the inspiration to be found there has transformed a common platitude into a sincere fact: it is, without a doubt, an honor just to be nominated.
The Art of Transliness
The triumph of visible trans advocates like Laverne Cox makes headlines, but this blog provides insight on the ongoing, day-to-day challenges of the trans community.
My favorite blog name ever. This site devoted to queer women, or “girl-on-girl culture” as they describe it, is a hip blog mixing pop stories and stigma-bashing commentary.
Box Turtle Bulletin
Anti-gay rhetoric doesn’t stand a chance in the face of this site providing news, analysis, and fact-checking.
Holy Bullies and Headless Monsters
Lies in the name of God are still lies. This site analyzes and refutes the LGBT inaccuracies of religious conservative organizations.
Thank you, my friends. I have said that finding my voice through this blog has saved my life, and those words ring especially true today. And in case I don’t have the opportunity for an acceptance speech, allow me to thank the most important person now.
Michael, I love you. Being engaged to a man like you is the biggest reward of them all.
Tags: aids, barebacking, conferences, criminalization, culture, gay, gratitude, hiv, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 7 Comments »
Tuesday, January 13th, 2015
The first time I contracted gonorrhea, which in my day was affectionately called The Clap, I was 20 years old and had just moved to West Hollywood, California. It was 1981, disco was still thumping in the bars, and the bath houses were packed. My dance card was filled.
When I admitted my telltale symptoms to a friend, he directed me to the local clinic in the heart of the gay strip. The waiting area, filled to the brim with gay men, had the undeniable scent of Brut cologne and testosterone, and despite the circumstances we all cruised one another through sheepish glances.
It was embarrassing but not the worst day of my life. The clinician touched me in private places with rubber gloves and the shot he gave me worked. Life went on.
During my early years of recreational sex in the busy gay mecca, I caught The Clap so many times I called it The Applause.
No one told me I should be using condoms, not in the clinic and not among friends. The very suggestion would have been ludicrous. Half the fun of being gay was the blithe disregard for rubbers. We knew the symptoms of trouble and dealt with it accordingly. An STI (sexually transmitted infection) was an annoying rite of passage and little more. We had not yet met a virus that could harm us in any significant way.
Which brings me to a common objection to the use of pre-exposure prophylaxis (PrEP) for the prevention of HIV transmission. Skeptics of the strategy warn that taking a pill to prevent HIV does not guard against other STI’s and therefore condoms must continue to be used.
When did avoiding every possible STI become the new goal for gay sexual behavior? Syphilis, chlamydia, and gonorrhea are all easily treated and cured. Scary campfire tales of a spreading superbug impervious to all treatment have failed to materialize. The very idea of getting The Clap again just makes me feel nostalgic.
No longer is avoiding HIV the prime objective; we must also now use a condom every time so that we are never exposed to, well, whatever. How many hoops must we jump through in order to fuck in a pleasurable way? We can’t win for losing.
I’m beginning to wonder if the avoidance of pleasure has become the real objective; after a generation of fear and mortality, we don’t see pleasure – and I mean sweaty nasty bodily fluid exploding pleasure – as a basic human need we can enjoy as gay men, much less deserve. Meanwhile, heterosexuals acquire STI’s or get pregnant with the same regularity as always. Our gay sin is always greater.
Whatever moderate concern we once had for contracting an STI (and empathy for those getting one) has been transformed into a fearsome judgment of any repercussions of gay sex, regardless of its actual threat to our health. It’s a shame-based, sex-negative ideology and it is painful to observe, particularly within my own community.
There are many ways to avoid HIV infection that can still give you an STI. That’s true. And every person should engage in sober reflection and make their own assessment of what risks they are willing to take. I am a proponent of “shoot the alligator closest to the boat,” meaning, prioritize the risk and act accordingly.
Gay men who take steps to avoid HIV practice a number of strategies: they choose PrEP, or limit themselves to oral sex with partners whom they don’t know, or they only top, or they know their partner is undetectable, or they are themselves on successful treatment. All of these methods can prevent HIV transmission but can still expose someone to an STI.
I consider the man who employs these strategies, and maintains a relationship with his health care provider to monitor any infections, a success story. I have no interest in telling him to jump through a few more hoops if he wants to be truly, totally, super safe from all of life’s ills. There is a cost to being human and of the pleasures we seek, whether it’s sex or fast cars or that second piece of cake.
Unfortunately, because the topic is gay sexuality, it tends to make some of those alligators appear much larger than they really are.
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 33 Comments »
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!
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
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 2 Comments »
Monday, June 16th, 2014
Charles Sanchez skips a lot. It is a natural, vivacious skip, an outpouring of unabashed joy that melds the cheerfulness of The Sound of Music with the bliss of the Pharrell Williams “Happy” video. Nothing stands in the way of his delight. Not even life with HIV.
It is that joyful vibrancy that makes Merce, the web series in development by Charles and his production partner Tyne Firmin, feel so refreshing. Considering that characters living with HIV on television are few and far between — or presented as tragic — the project feels, well, almost subversive. And that’s exactly why Charles is pursuing his dream of bringing Merce to life.
“There’s something brave in Merce as a character,” said Charles in an interview. “I think Merce is me, if I had not been so worried about what people thought of me. He’s honest and hopeful, and I think that’s something people don’t always expect in someone who is HIV positive.”
Indeed. In a YouTube video, Charles asked people on the streets of New York what their favorite HIV character on television was. The answers, when anything at all came to mind, was decades-old portrayals from cancelled series, or actual people, like Magic Johnson or Mondo Guerra from Project Runway. “The only ongoing television character living with HIV is a Muppet,” said Charles. The production team hopes to add another character to the HIV canon that isn’t dying or a criminal.
“Usually, you can practically hear the foreboding dum dum DUUUM in the soundtrack when someone discloses,” said Charles (left). “Or on Law & Order, they’ll find the bottle of AZT in the dead man’s medicine cabinet and say, ‘well, that explains that.’ I think it’s time for us to have a conversation about normal life and HIV.”
Merce grew from another series created by Charles and Tyne, Manhattan Man-Travels, that revolved around the lives of gay men in New York. Filmed guerilla style using a Flip cam, the series has the low-budget appeal of early John Waters. “Our only budget was for apple fritters,” said Charles. “We love apple fritters.”
For Merce, the producers are using an IndieGoGo campaign to raise $15,000 for costumes, better camera equipment, and higher production values overall (tax deductible donations for as little as ten dollars can be made to the campaign until July 4th, which is administered through the non-profit arts organization Fractured Atlas).
As with most comedy, Merce grew from something more serious. In a video explanation of his own life with HIV, Charles recalls one of his first jobs in New York as an actor in 1987 — playing the part of AIDS Related Complex (ARC) in Attack of the Killer Virus, a musical geared to educating youth about the new disease. Before long, it was Charles himself who would be discovered by his roommate, sick and unconscious, in their apartment. His AIDS diagnosis brought a new urgency to his art and how best to use it to educate and inform.
Having survived that, and the love Charles has for musical theater, might help explain the skipping. “I’m a pretty happy and optimistic person, and I wanted Merce to have that in abundance,” Charles said. “I’m creating a show with a main character who doesn’t let his HIV define him or keep him from all the joys of life. Merce makes a lot of mistakes, but he celebrates life. Why not grin and laugh at life? Life is hilarious.”
While television may still be grappling with how to portray HIV in contemporary life, literary fiction remains a few steps ahead. In his challenging, sometimes frustrating new novel, Sally Field Can Play the Transsexual, author Leslie L. Smith asks us to examine the nature of modern gay sexual behaviors. Do we engage in unprotected sex out of defiance, grief, pleasure, or pathology?
There is much to consider in Smith’s story of David Matthews, an entitled gay escort engaged primarily in his own self-interest. When a benefactor wills David riches and asks him to pay it forward, the immature hooker begins a quest to reconcile his small-town upbringing with the numbed pleasure-seeking of his vocation.
Anyone who escaped home to pursue gay life elsewhere will relate to that journey, but the central device of the novel — the ghost of the rich man appears to David and sticks around to provide vague counsel or witty bon mots — reads like a uneasy grafting of gay sexual politics and the movie Ghost. The infusion of farce into an otherwise thoughtful reflection on what it means to be a responsible gay man today is jarring.
That’s a shame, because there are scenes in this book that go straight to the heart of our common experience navigating sex in the age of HIV. During a visit to his Arkansas home town set a few years ago, David hooks up with a local hottie and they fall into bed together. The reaction of his conquest when David attempts to forgo a condom is heartbreaking. “I’ve heard of people doing this,” the hottie says plaintively as he ends their encounter, “but I didn’t think it was true.” Even today, in a time of PrEP and undetectable viral loads, the simplicity of the statement will have gay men everywhere reflecting on their choices.
Bringing important discussions to life is why Leslie L. Smith should keep writing. His ear for the here and now is acute and authentic. He just doesn’t need spectral accoutrements.
Navigating relationships is also on the mind of Damon L. Jacobs, a New York based gay therapist who provides clear, helpful advice to couples in his book, Rational Relating. Although the guide is meant for couples of every stripe, Damon thoughtfully includes plenty of tips for gay men in particular.
His advice is deceptively simple and easy to apply to our lives. His “five pillars” of integrity, communication, compassion, responsibility, and compromise are all examined through his work with various couples and the challenges they face in building a life together. The book is meant as a resource that couples might draw upon, and the result is a helpful tool that can benefit anyone.
Damon is widely known for his advocacy around Pre-exposure prophylaxis (PrEP), but that’s not his purpose in Rational Relating. It is nice to see, though, that what makes him a strong advocate is grounded in his professional experience helping people find integrity and meaning in their personal relationships.
Wednesday, April 23rd, 2014
“Talk to me like you talk to your friends when no one is around.”
That was my only request when I sat down with each of four HIV negative gay men to create a short film about their lives and attitudes (video below).
They held back nothing, sharing details of their sex lives, their fears of becoming infected, and, perhaps most surprising, what they really think of HIV positive guys. I couldn’t believe their candor, and have worked to distill two days of explicit conversations into ten minutes of brutal honesty (the language is sometimes NSFW).
They don’t speak for every gay man, only for themselves, and the differences of opinion between them is really striking. It really is a snapshot of what it means to be a negative and sexually active gay man these days. No matter which of these men you might relate to the most, there’s no doubt they are all just trying to carve out a satisfying sexual existence during a pretty confusing time.
I couldn’t help thinking of The Golden Girls when I was editing, because all the archetypes are here: the reserved one, the sensible one, the endearing one, the man-eater. Just saying this makes me guilty of the very thing the video is meant to address: how easily we label ourselves and others, and how we try to assign the same perspective to entire groups of people.
I deliberately produced this without any particular context. No one is presented as right or wrong. It is meant to provide a forum for these men to speak their truth without interruption — and perhaps help us see them as men stumbling through life as we all are, trying to make the best decisions they can with the information they have. I refuse to judge them for that.
If there is anything to be learned from this video, it is that there is no monolithic “HIV negative perspective.” Gay men are far too diverse for that. That’s a lesson our community seems to have to learn over and over again.
Tuesday, March 11th, 2014
There is a classic episode of Oprah from 1987 that can still raise my blood pressure. That year, the tiny town of Williamson, West Virginia, became part of a national discussion about AIDS when Mike Sisco, who had returned to his home town to die of the disease, dared to step into a public pool.
The community freakout was immediate. Sisco was quickly labeled a psychopath (rumors emerged accusing him of spitting into food at the grocery store), and the town pool was closed the next day to begin a Silkwood-style pressurized cleaning.
Soon thereafter, Oprah Winfrey arrived with cameras for a town hall forum about the incident. Fear was the order of the day. “If there’s just one chance in a million that somebody could catch that virus from a swimming pool,” the town’s mayor told Winfrey’s worldwide audience, “I think I did the right thing.”
Sure. Why not react in the most extreme way possible, if there is a chance in a million?
Williamson citizens were not swayed by health officials who calmly explained the established routes of HIV transmission and the impossibility of infection from a pool. “The doctors can say you can’t get it this way,” a woman countered, “but what if they come back someday and say, ‘We were wrong?'”
Indeed. What if? If there’s a chance in a million…?
That broadcast might have remained a sad footnote in HIV/AIDS history, an instructive example of people ignoring scientific fact to protect a satisfying fear, if history didn’t enjoy repeating itself so much. Today, though, the willful ignorance isn’t coming from uneducated residents of a southern town you can barely find on a map.
It’s coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago.
Recently, research known as The PARTNER Study was presented at the prestigious Conference on Retroviruses and Opportunistic Infections (CROI). PARTNER proved something HIV advocates have long suspected: people with HIV with an undetectable viral load are not transmitting the virus to their partners. The study included nearly 800 couples, all involved in an HIV positive/negative relationship, gay and straight, with the positive partner maintaining an undetectable viral load. Over the course of two years, more than 30,000 sex acts were reported and documented (couples were chosen based on their tendency to have sex without condoms).
Not a single HIV transmission occurred during the study from someone with an undetectable viral load. If PARTNER had been researching a new medication, they would have stopped the trial and dispensed the drug immediately.
The PARTNER results bolster the prevention strategy known as “Treatment as Prevention” (TasP), meaning, a positive person on successful treatment prevents new infections. To date, there is not a single confirmed report of someone with an undetectable viral load infecting someone else, in studies or in real life.
Just don’t tell that to a sizable contingent of skeptical gay men, many of whom took to their keyboards to dismiss the PARTNER findings. Phrases like “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” appeared on Facebook postings and in web site comment sections. The people of Williamson must be slowly nodding their heads.
Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP.
Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on in the minds of gay men. What is it?
Our collective memories of AIDS horror are hard to shake, and that’s a good place to start. On a gut level, any study suggesting that HIV could be neutralized is met with a weary doubt. Good news is no match for the enduring grief that has shadowed us for 30 years.
The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community.
It’s tough to do that when fear creeps in and “what if?” fantasy scenarios take hold. What if my partner missed a dose yesterday and, even though HIV meds stay in the bloodstream for extended periods, his viral load has inexplicably shot up? What if he isn’t being truthful about his viral load? What if he doesn’t know?
The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative but are not. But we’d rather stay focused on the positive person being at fault, because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim.
I have some “what if?” questions of my own. What if these unrealistic fears were meant to stigmatize and isolate HIV positive people? What if I am undetectable and feel no responsibility to discuss my status with a sex partner because I don’t care to engage in a science lesson? What if everyone availed themselves to prevention options that worked best for them? What if my HIV status were none of your damn business?
These risks could be alleviated, of course, if everyone simply protected their own bodies when having sex with people they don’t know or trust. But that would place an equal burden on negative men, and what a bother that is. Better to leave that discomfort to those with HIV, vectors of disease that we are. Just consider us criminals, lying to you about our viral loads and spitting in the food in Williamson, just waiting to infect you when we get the chance.
As long as we’re giving undue attention to fantasy scenarios we’re not focused on the real threats. The rates of STD’s are up. Young gay black men in the United States don’t have proper access to healthcare and have infection rates worse than any developed country. Our community is plagued by alcoholism, addiction, and mental illness. Do we want to debate established science or should we devote that energy to other challenges to gay men’s health?
If you still have the arrogance to believe you could win the HIV Powerball Lottery and be the one person who gets infected in ways science has disproven, you’re perfectly entitled to that point of view.
Here are some helpful instructions, however. Carefully step away from your computer and don’t touch the cords because 50 people die of product related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Once there, refuse food or water because, well, you never know. Now slip into your bed of willful ignorance and try to make yourself comfortable.
The good people of Williamson are keeping a spot warm just for you.
p.s. In the time it took you to read this article, the number of people who were infected by someone with HIV who had no viral load was zero.
Monday, January 27th, 2014
“We don’t know the side effects of this drug. It’s too expensive. Insurance won’t cover it. It hasn’t been studied enough. It will encourage slutty behavior. And why the hell don’t people just use condoms?”
– Objections raised to the oral contraceptive progesterone (“The Pill”), approved by the FDA 54 years ago.
When the drug Truvada achieved FDA approval in July of 2012 as a medication to prevent HIV infection among people who are negative (a strategy known as pre-exposure prophylaxis, or PrEP), it’s as if the ghosts of naysayers from the 1960’s rose from their resting places, delighted and re-energized, and began drilling their mid-century objections into the hearts and minds of contemporary society.
Maybe proponents of PrEP like myself believed the response to the drug would be more enthusiastic. Surely anyone who lived through the horror of early AIDS would thank God that a new prevention strategy exists that doesn’t rely upon condoms alone. The fury of the response has been a little startling to me.
Fortunately, Facebook groups and online sites that explain the facts about PrEP are springing up everywhere to address misinformation and to clarify legitimate areas of concern. Here are the most persistent objections to PrEP, and the facts as we know them.
People wouldn’t need PrEP if they would use condoms. They just want to bareback. Studies show that people on PrEP do not have an increase in high risk sexual behavior, but cynics have visions of wanton orgies ahead worthy of vintage gay porn. Alas, what others do in their sex lives is out of our control, whether that drives people up the wall or not.
The facts are these: more than half of gay men do not use condoms or do not use them consistently. This fact has remained true throughout the 30 years condom use has been measured among gay men, including during the darkest years of the AIDS crisis. We can address 50,000 new infections a year or we can have a useless moral debate.
The lack of condom use is what makes PrEP so exciting as a prevention method. The very first large study of Prep was the iPrEX Study, an international study of 2,500 people that was comprised mostly of gay men and some transgender women. The study showed that people who use Truvada as PrEP correctly (taking a pill every day) can have their risk reduced by 90% or more, depending on adherence. Some models show an efficacy rate of up to 99% based on near-perfect adherence.
PrEP is also not dependent on last minute decisions in the heat of passion. Taking a pill in the morning is calmly detached from having sex that night.
PrEP is not necessarily an either/or proposition, because lots of people taking PrEP are also using condoms. But let’s be real. Most people seeking out PrEP already don’t use condoms or they don’t want to use them anymore. Since they are trading one prevention device for something that has a better success rate and is easier to use, what’s it to you?
We don’t know the side effects of Truvada. We have years of data of Truvada side effects on people with HIV (it’s been FDA approved to treat HIV since 2004). Truvada was selected for clinical trials as a PrEP drug because of its favorable safety profile.
It is true that there are some reports of bone density and kidney problems among people with HIV using Truvada as part of their treatment regimen. These side effects have sometimes been serious. We can’t assume the experience of HIV negative people will be the same, and that’s why Truvada patients, positive and negative, should be routinely tested for bone density and kidney function.
More and more HIV negative writers and bloggers (and even a gay porn star) are sharing their experiences on PrEP but, thus far, side effects haven’t been part of their story. Watching them share their progress publicly over time should be quite interesting.
Understanding side effects is part of the assumed risk we take with medications, as any television commercial for a pharmaceutical drug will attest. If you don’t want to cough up blood, for instance, or have bloody stools or nausea or a ringing in your ears, don’t take aspirin. Those side effects are uncommon, and so are the side effects for Truvada.
People taking PrEP also have the option of discontinuing Truvada depending on life events and necessity. Maybe you stop dating the HIV positive guy, or take a break from casual sex, or return to condoms for a while. Starting and stopping the drug in this way does not lead to resistance as long as a medical professional verifies you are HIV negative before restarting.
If you are wary of Truvada side effects, don’t use it. And allow others to make that same determination for themselves.
PrEP is too expensive and insurance won’t cover it. This argument is losing steam rapidly. The Affordable Care Act in the United States is underway and by all accounts every insurance company as well as Medicaid is covering Truvada — although it may require pre-authorization from a doctor for use as PrEP (the CDC has produced a handy document available online to help explain PrEP to your physician).
For those without insurance or money for a co-pay, Gilead (the maker of Truvada) has a patient assistance program that can provide the drug outright or supply co-pay cards worth up to $200 per month. Even if none of this were true, the potential benefits of a drug should not be assessed solely by its price tag.
The people who need it most can’t access it anyway so what’s the point? It’s a good thing we don’t have this attitude towards condoms. Access isn’t the same as efficacy.
But it is certainly true that young gay black men, whom the epidemic is affecting in shocking numbers, have less access to healthcare. This is a systemic problem and it is unfair, frankly, to expect PrEP to solve it. It is also true that PrEP can be an occasion for HIV negative people to seek care, and once on PrEP they are typically required to have medical follow-ups throughout the year, which offers obvious benefits.
The biggest hurdle is often physicians themselves. HIV negative people may have a doctor unfamiliar with HIV care, much less PrEP, and those doctors are often intimidated by what they see as the complexities of HIV treatment. Until more professional education is done, potential PrEP users must learn to advocate for themselves and share CDC recommendations with their doctor.
People won’t adhere to PrEP and that will create resistant strains. It is true that in some early PrEP trials adherence was a problem. Real life behaviors, though, differ from clinical trials in some important ways.
Trial participants have no idea if they are taking the actual drug or not, and in trials the efficacy of the drug hasn’t even been proven. So, the commitment of trial participants to stay adherent to the drug is less rigorous than users today, who know that the drug works, know they’re getting the real thing, and are invested in remaining HIV negative. People taking PrEP today have more skin in the game, as it were.
For those who do miss the occasional dose, Truvada is somewhat forgiving. The protective ability of the drug doesn’t drop if you miss a single dose because Truvada remains in the blood for up to 72 hours (compare that to missing a condom occasionally, which CDC statistics show to be as risky as never using them at all). That being said, it is optimal and recommended that Truvada be taken consistently each day, and users should take seven daily doses for Truvada to achieve optimal protection.
Taking Truvada alone when a PrEP user doesn’t know they are already positive can lead to resistance and significantly reduce treatment options. Resistance has not been found with individuals who were verified HIV negative at the time they started Truvada, but it has happened in people who became HIV positive due to low adherence.
PrEP is just putting money into the pockets of pharmaceuticals when we have cheaper solutions. I can’t imagine anyone telling HIV positive people not to take their medications because their drugs are making profits for Big Pharma. The argument that HIV negative people aren’t worth a fraction of that investment astounds me. I suppose we should wait until negative people get infected before it’s okay for them make a profit for the drug companies.
And those are the facts as we know them about PrEP. I have no delusions that the debate will calm any time soon, of course. Human nature is far too predictable for that.
Just recently, politician Mike Huckabee addressed a gathering of fellow Republicans. Part of his remarks, delivered half a century after The Pill was approved for contraception, was his belief that “smart” women don’t need the government “providing them a prescription each month for birth control because they cannot control their libido.”
Right. Because birth control, as critics have been saying since 1960, would be unnecessary if women only showed some restraint and didn’t behave like barebacking sluts.
Everything old is new again.
My thanks to HIV advocate Jim Pickett of AIDS Foundation Chicago for his expertise on this issue. Jim is active in the development of rectal microbicides (lubes and douches that kill HIV on contact). Damon L. Jacobs, who writes about his personal experience taking PrEP, also served as a resource.