Posts Tagged ‘research’
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
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 2 Comments »
Monday, July 14th, 2014
(NOTE: My AIDS2014 coverage is exclusive to TheBody.com this year and you can find my daily videos on their main page beginning this Sunday, July 20th.)
Are you ready for a theater piece about HIV that takes place on an enormous bed that doubles as a boxing ring? How about a candlelight march with thousands of advocates from around the world? And don’t forget my favorite — the Global Village, stuffed with art and advocacy from every corner of the planet? All this and more will be part of my coverage of the upcoming International AIDS Conference!
I’m headed down under for AIDS2014 in Melbourne from July 19-25! I’m so excited to be creating exclusive coverage for TheBody, the site that sent me my first camera and said, “just do what you do.” I’m so proud of my association with this tremendous online resource.
To watch my coverage, you’ll have to go to TheBody.com. My whimsical, sometimes emotional reporting will be hard to miss from their main page and should begin on Sunday, July 20th.
In Melbourne, I’m going to leave the clinical data and research to those better qualified. Instead, I hope to provide you with something you might not see anywhere else: the advocates, the people living with HIV from around the world, and the awesome visuals of the music and dance and theater and human drama of the conference.
Are you ready? Let’s go!
p.s. To watch my coverage, just head to TheBody and look for my video coverage, beginning Sunday, July 20th. I hope to post every day!
Tags: aids, conferences, criminalization, help others, physician, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »
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.
Friday, February 28th, 2014
In the late 1980’s, I let this odd, fussy man into my office at LA Shanti, my first AIDS agency job. He seemed earnest and harmless and he just wanted a few minutes of my time. “I have the cure for AIDS,” he politely announced. Sadly, he wasn’t the first person to say that to me, but we practiced more suspension of disbelief during that wretched decade so making such a statement wasn’t immediate cause for removal from my office.
He set a wooden box on my desk, the size of a breadbox and with unfinished wood, like something you had just started building in shop class. He opened it to reveal a jumble of wires and what appeared to be a very large battery of some kind. It looked like a bomb.
“Electromagnetics,” he said, with his index finger up, like a teacher. I was so entranced by the device that I didn’t notice him attaching one of the wires to my finger with a clip. I felt it softly bite my skin and looked down, horrified.
His scholarly tone didn’t change at all. “When I attach this to your other hand,” he said, reaching for it, “the magnetic field will purge your body and your blood.” I saw him taking my other hand. “This is science,” he added proudly. He was smiling.
I sprang from his grasp and shook the clip from my finger. I suddenly remembered I had a staff meeting. An extremely important staff meeting. I thanked him and excused myself to get to my very important, life saving staff meeting.
It’s tricky in the HIV community, using the “C” word. Long term survivors like me have had our hopes raised so many times, only for the rug to be pulled out from under us, again and again. The list of miracles-in-waiting goes as far back as the dawn of the AIDS crisis itself. Herbal remedies. Rare fish guts. Tribal potions from exotic locales.
And so picking up a new book with that word right in the title, well, you can imagine the skepticism.
CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science is exactly as advertised and a little more. Nathalia Holt‘s (below) engaging new book is quite a pleasant surprise, taking a user-friendly approach to its complicated subject. Not only does it provide the timeline of the advancements to date in HIV cure research, it gives us juicy, humanizing details about all of the players involved.
Much of Holt’s book has the characterizations and forward motion of a good novel. We meet “Christian” (not his real name), the first Berlin patient who has achieved a functional cure to date. We find out exactly what happened in that Berlin clinic when he received his HIV tests results, what he was feeling, how it affected his relationships. We learn that it was Christian, not doctors or scientists, who elected to end treatment after several months (beginning very soon after his infection), leading to the discovery that his virus was under control and has not flared up since.
The same goes for Timothy Brown, who achieved even more notoriety as the later “Berlin Patient” because of the drama of his curative process (he had two bone marrow transplants and nearly died more than once) and because he has been willing to be public about it.
Timothy is the real heart of CURED. His endearing humility draws you to him as the book follows everything from his medical journey to his love life to his surprisingly modest existence today.
(In both Christian and Timothy, minute amounts of HIV virus have been located in their bodies since their treatment, but these reservoirs have not caused health problems. This is known as a “functional cure.”)
All the principle players evidently cooperated with Holt, an HIV researcher herself, and the level of access shows. We not only learn who each of the major researchers are, but what brought them here, what their families are like, and what personal sacrifices they faced along the way. Particularly juicy are the stories of egos and competition among the scientists — and how people who made no contribution at all to various studies scrambled to get their names attached because of the cutthroat world known as academic publications.
Science has never been my thing. I’m not confident writing about it, and intimidated by reading about it. But, except in its last chapters when Holt hurriedly catches us up on the latest research, CURED is easy to follow and has engaging insight into the very real people behind the headlines.
And hey, how cool is it that no one was electrocuted as part of this research?
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.
Thursday, January 9th, 2014
In the summer of 2013, thousands of subscribers to Nelson Vergel’s “PozHealth” listserv received a startling email from the HIV positive fitness and nutrition expert.
“You are probably wondering why I have been so quiet the last few weeks…” the message began. Vergel, a trained chemical engineer who devoted himself to HIV treatment advocacy after testing positive in 1985, had a troubling explanation for his online absence. A diagnosis of cancer.
“It took me months to come out to the poz group,” Vergel said about revealing his diagnosis to his listerv. “It was a struggle for me.”
Vergel had begun the group in 1999 when lipodystrophy was a hot topic among people with HIV/AIDS and they needed a place to compare notes, and it has since become the largest treatment information listerv for people living with HIV. It still thrives at a time when the exchange of HIV treatment information among peers has waned.
The success of the group perfectly reflects the dedication of its host, a gay bodybuilder whose own serious struggle with AIDS over the years belies his appearance of physical strength. Group members clearly admire Vergel and see themselves in his medical challenges and triumphs.
So it was with some trepidation that Vergel revealed a new health crisis to the group, one that forced his HIV to the back burner. “I was very concerned that people might panic, not about me, but themselves. I didn’t want them to think this applied to them,” Vergel said. “I really was more concerned with them projecting my challenge onto themselves.”
He had little choice, however. His condition was serious.
In June, Vergel was experiencing stomach problems that doctors initially believed to be ulcers. Then came a diagnosis of H Pilori, a stomach bacteria. Vergel requested an upper GI endoscopy, during which ulcers were found and biopsied. While treatment with antibiotics killed the bacteria, the news from the biopsies was grave: Vergel had a aggressive brand of cancer known as non-Hodgkins lymphoma.
“I was shocked,” said Vergel. It wasn’t the feeling of impending death he had experienced when he tested HIV positive in 1985, but something more incredulous. “It hit me really hard. I had been preparing for heart attacks, or anal cancers, which I have checked every year. I was controlling those high risk situations. But this…?”
Despite the cruel irony of battling mightily against one disease and then facing another, it didn’t take long for Vergel’s instincts as a treatment advocate to take hold. “After I got the news, I got into my car and cried a little,” he said. “And then, before I called my partner, I got on the phone and did a Google search.”
His research confirmed the treatment plan of chemotherapy that his doctor recommended, but he soon discovered that cancer healthcare isn’t nearly as accustomed to empowered, involved patients as is the world of HIV.
“I realized how behind oncology is from HIV,” Vergel said, “because there are fewer online resources for patients. It felt like early HIV. They don’t discuss side effects until they happen to you. I kept finding out things randomly. It made me realize how good we have it in HIV. In oncology all they care about is killing the cancer. But part of the goal should be protecting the patient from side effects.”
His treatment as a patient was often the antithesis of what he has advocated for HIV patients for decades. That advocacy, and Vergel’s influence in crafting programs to empower HIV patients, is considerable.
Vergel educated himself on HIV pathology and medications after his HIV diagnosis, and became involved in several national health commissions, leading to his founding of the Program for Wellness Restoration in 1994. Because of his interest in physical fitness, he pushed for federal funding for studies of anabolic steroids and promoted results of earlier studies that showed that once you reach 55% of lean body mass, your chances of survival drop precipitously.
He was convinced that resistance training, nutrition and supplements are a key weapon against HIV. His 1998 book, Built to Survive, found a place on the shelf of nearly every gay man who had HIV and a gym membership.
For better or worse, the image of muscled gay men with HIV that emerged in the 1990’s, pumped up from weight training and anabolic steroids, can be directly attributed to the seminal work of Nelson Vergel, who trumpeted the importance of lean body mass in fighting HIV infection and maintaining a healthy immune system.
Unfortunately, his own HIV has been multi-drug resistant, and Vergel is currently on the last available regimen to treat his disease. The clinical expression for patients like him is “treatment failure.” Vergel hates the term.
“Being called a failure sends the wrong message to patients,” he said. “and I have been trying to change that language in the treatment world. It’s demeaning to patients who are adherent.”
As his cancer treatment progressed, other differences between his two health crisis emerged.
“A good friend of mine was diagnosed with cancer the week before me. He said, ‘I have neighbors cooking for me. Doing my laundry. Isn’t it sad that I could never disclose my HIV, but I can disclose this and everyone rushes to help? This is a diagnosis that my community can get behind. Isn’t it sad that HIV isn’t the same way?'”
The good news is that, unlike Vergel’s history with HIV medication, the cancer treatment seems to have worked.
“There is no cancer based on my last biopsy,” Vergel said. True to form, Vergel made the decision himself to stop the rounds of chemo early because he was concerned with its effect on his immune system. But he remains vigilant. “You are never cured of cancer. Like HIV, you have to keep an eye on it.”
The last six months have been “the most intense of my life,” he said, but it has also included signs that life, and joy, can go on. Vergel and his longtime partner were married in Washington, DC, on September 21.
“Always enjoy the moment,” Vergel said. And then he adds an observation for those living with HIV. “Apply what you have learned in HIV and take control of your own health, no matter what the diagnosis. Oncologists are not used to seeing patients like us. Long time HIV survivors have many years of experience dealing with the healthcare environment, we have gathered lessons on second opinions, questioning our doctors, we’re relatively young and healthy and have learned a lot of skills.”
Today, Vergel is again busy posting to his POZHealth listserv, offering advice in TheBody.com’s “Ask the Experts” forum, and he just founded a new men’s health program, ExcelMale . Even the hair he lost during chemo is growing back.
“I didn’t know how resilient I was until I went through this,” Vergel says, and then there is a thoughtful pause. “Resilience. I like that word.”
Some of the most popular My Fabulous Disease videos have shown Nelson trying to whip me into shape. “Fitness Stud Nelson Vergel Raids My Fridge” is hilarious and informative, “Hitting the Gym with Fitness Expert Nelson Vergel” benefits from his tight tank top, and “The Hard Facts on Erectile Dysfunction” offers advice on, well, you know (and opens with us in bed together). Check them out!