Posts Tagged ‘aids’
Saturday, March 5th, 2016
In a forsaken block of Santa Monica Boulevard, off the street and through an imposing industrial alley, a Hollywood disco opened in the late 1970s that made promises the other gay clubs were loathe to keep.
The two-story face of a clown, with an enormous, yawning mouth serving as the front doorway, stood sentry. There were no rules for entrance, no discerning bouncers selecting the lucky ones, no outfits to be appraised. Anyone who scraped together the cover charge was welcome.
Across town in the shining gay mecca of West Hollywood, dance clubs and bars like Studio One and Mother Lode pulsated with the new, synthesized beat of Donna Summer. Her mind-blowing dancefloor smash, “I Feel Love,” played on a seemingly endless loop. But love was often conditional in those clubs, which were populated by gay men with impossibly muscled bodies and skin only as dark as a California tan would allow. Love had standards.
Circus Disco — along with the Los Angeles black gay club, Jewel’s Catch One — practiced a truer level of acceptance, filling its dance floor with a largely Latino and black clientele, but the crowd didn’t simply cross racial divides. Peppered among the partying throngs were transgender pioneers and leather men and drag queens, gyrating to the new music of the B-52s and sharing powdery glass vials from one clutch of dancers to another.
I was one of those misfits when I discovered Circus Disco in the late 1980s. I bore the inner mark of the new plague, having tested positive for HIV in 1985, and it felt like a secret that disqualified me from the male magazine perfection of West Hollywood. The murderous storm of AIDS struck without interest in outward appearances, of course, but with my feelings of woeful damage I needed desperately to believe that Circus Disco was the oasis it promised to be.
It did not disappoint. A buoyant cross section of humanity greeted me each weekend to a tempestuous party where you could fall urgently in love while in line for the bathroom and furtive sexual fumblings happened in plain sight. The citywide racial tensions that would eventually lead the city into riots were mercifully muted. The dance floor crowd was as multi-colored as the light show.
Joyous exuberance reverberated with the thundering dance floor beat as shirtless men celebrated a confident sexuality and the limitless possibilities of life ahead. The constant thump! thump! thump! of the music was our clarion call and it proclaimed, Here! Here! Your tribe is here!
We were so beautiful, in ways we were much too young to know.
Circus Disco partied on through the 1990s and beyond, impervious to fickle music trends and even resisting pressure to remove the word “disco” from its name. The crowds ebbed over the years but the club never faltered, right through its recent closure, in the genuineness of its welcome.
And now, in a story that might only happen in Los Angeles, historic preservationists have convinced new property developers that the Circus Disco building warrants respect for its place in LGBT history. Portions of the club, such as the dance floor and mirrored ball and even the clown face entrance, will be incorporated into the design of the apartment building the site will become.
Like many of my dance partners from those nights at Circus Disco, I am now many years and thousands of miles from the magic of the club’s brightly lighted floor. We are a scattered people.
There are those, too, who were swept away by the firestorm of AIDS. Remembering the lost, their lives extinguished in the very years they found the community they sought, makes me all the more grateful that Circus Disco will be memorialized. It was as much a force for good in our community, in its own way, as any LGBT organization of that perilous time.
Circus Disco is lost to the ages now, but residents of the new apartment building would be wise to listen carefully for sounds coming from another era. The DJ is spinning and the disco divas are cooing, inviting legions of spirits back to the dance. There are boisterous people, a glare of silhouettes in a laser show, stepping onto the floor. The crowd is swaying to the beat and laughing and holding one another. They are all beautiful, and they know it at last.
And they feel love.
Thursday, January 14th, 2016
Dr. Oz has a very strange verbal compulsion. He can’t stop making lame metaphors.
When taking an early morning jog with Charlie Sheen, in the first of their two-part interview for The Dr. Oz Show, the doctor sees metaphors everywhere. “You have to look down so you don’t see how steep the hill is,” he says as they putter upwards. “It’s sort of like life, isn’t it?”
Descending the hill sparks another metaphoric burst from the talk show physician. “It’s always easier going downhill,” he says to Charlie. “What’s going downhill like now that you’re public about your HIV?”
It became tough not to participate. Oh look, doctor. A rock. It’s like the hard place Charlie has found himself. Or maybe it’s the blunt instrument I will use to bash my head in after watching this inane, dangerously misinformed interview.
I had such high hopes. Charlie’s coming out interview on The Today Show was as focused and informative as anyone could have expected from the troubled star. I was actually moved by Charlie’s discomfort, and related to his obvious apprehension about making such a public disclosure. Better yet, the interview had the entire world talking about the meaning of “undetectable viral load,” something I never saw coming and a great service to HIV education.
Well, it was great while it lasted. I am dismayed to report that Tiger Blood Charlie is back and he has gone rogue. And his Chasing the Cure! conversation with Dr. Oz might be the worst thing to ever happen to AIDS cure research, or at least the most irresponsible reporting about it.
But first, before the TV show bothers to get to the “provocative development in his search for a cure,” we must wade through the first hour and tour the home of the we’re-pretty-sure-he’s-not-batshit-crazy-anymore star. He makes healthy shakes! He loves movies! He throws a baseball! Hey, there’s the tastefully appointed bedroom where he banged and allegedly assaulted women!
Charlie does discuss his treatment and their side effects. “Poopy pants,” he reveals. His advice is to wear black underwear. I intend to contact Treatment Action Group immediately to share this revelation.
To his minimal credit, Dr. Oz shows concern for the various addictions of his guest, from gambling to cocaine, but his light touch suggests this circus can’t afford for the star to bolt. Never mind that Charlie claims he only stopped drinking once the Today Show interview was complete, and that he has tried to stop “hundreds of times” before. Appearing on national television is apparently much more therapeutic than finding the nearest rehab facility.
But on to the second hour, an in-studio interview with a live audience. This is where it gets really interesting — and gruesome and creepy and utterly insane.
Dr. Oz revisits Charlie’s hard-partying lifestyle and then asks him more questions about the horrendous, terrible news that he tested positive. The sum of the conversation was that Charlie Sheen’s diagnosis – and by extension, all of us living with HIV – is comeuppance for his crimes against nature.
But the best was yet to come. Finally, well into the second hour, Charlie reveals that his Chasing the Cure! led him not to actual experts in the field, but to Dr. Samir Chachoua, a doctor in Mexico about which little is known, except that he resembles Grizzly Adams after a hard night in Tijuana. Charlie had such faith in his quest that he stopped taking his medications in anticipation of seeing this nut.
And this Doctor of Quackery, in a phone interview with Dr. Oz, claims to have cured Charlie of HIV. “He’s the first person in history to go HIV negative,” says the Mexican madman, apparently unaware of the name Timothy Ray Brown. It’s like a crazytown online denialist come to life. But wait, there’s more.
Chachoua says, and Charlie concurs, that he drew blood from Charlie and then injected it into himself to prove his case, and that Charlie remained undetectable. Never mind that this was mere days after Charlie had discontinued his meds, which surely were still working in his bloodstream. The entire, bizarre scenario was like something out of American Horror Story: AIDS.
Back in the studio, Charlie’s own doctors reveal that his viral load has spiked again. His personal physician pleads with Charlie to go back on his meds. Charlie sunnily agrees. “What, am I crazy?” he jokes, to scattered, confused applause. Thus ends his first chapter of Chasing a Cure!
I prayed that Dr Oz would then introduce someone from the American Foundation for AIDS Research (AmFAR) to preset real facts about the current state of cure studies. Wouldn’t treatment activism icon Peter Staley make an excellent guest? David Evans from Project Inform? Please God, anyone. My prayers went unanswered.
Instead, Dr Oz turns from the actual physicians in the studio to pursue a far more important line of questioning. At this critical juncture in the interview, it was important to discuss movies.
“You describe your journey, chasing a cure for HIV,” Dr. Oz says in his most empathetic voice, “in a way that is similar to your dad’s journey in Apocalypse Now.” I’m sure Martin Sheen watched with pride, knowing his film career had become relevant again. “Has your diagnosis with HIV brought you closer to him?” The camera moves in to Charlie greedily.
Somewhere Barbara Walters was rummaging through her penthouse for a rope to hang herself.
There were actually a group of HIV positive women in the studio that day, some representing Positive Women’s Network, and during the taping they were given the opportunity to offer what was undoubtedly some much-needed perspective. But evidently they had nothing to say about Apocalypse Now or they were really bad at metaphors, because the segment was cut from the broadcast.
Charlie Sheen isn’t going anywhere soon. There is always hope he may regain his senses and become the high-profile cure advocate we need. But what we are currently witnessing is the exploitation of a deeply troubled man with multiple addictions.
Whether Charlie Sheen follows the path of other distressed celebrities, be it recovering addict Robert Downey Jr. or the very dead Amy Winehouse, remains to be seen.
(This piece originally appeared as one of my blog postings for POZ.com — Mark)
Tags: advocacy, aids, culture, help others, hiv, physician, politics, recovery, research, testing
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Tuesday, January 12th, 2016
When he conducted the funerals, Tom Bonderenko tells me, he always wore his priestly garments and white stole. Even when no one showed up for the graveside service.
“It was important to show dignity and respect,” Tom says. He taps the coffee cup in his lap nervously. “I’m sorry,” he says. He clears his throat but it doesn’t keep his eyes from welling up. “No one has asked me about this in a really long time.”
We are sitting in his office at Moveable Feast, the Baltimore meal delivery agency for those with life-threatening illnesses, where Tom has served as director for the last eight years. His office is spacious and cheerful, but this conversation is a difficult one. He had discreetly closed his office door behind me when I arrived.
When Moveable Feast was founded in 1989 to deliver meals to home-bound AIDS patients, Tom was engaged in a different, more literal ministry to the disenfranchised. He was a priest staffing a homeless shelter for Catholic Charities of Baltimore. It was there he met someone with AIDS for the first time.
“A young man came to the door of the emergency shelter, sometime in 1987,” he says. “He was covered in black marks. Lesions, you know. Everywhere. He said he needed to clean up before his first doctor appointment the next day.”
Tom had grown up in New York City, and as a gay man he had known people who died very suddenly, as far back as the early 1980’s. But he had never stood face to face with someone so ill with the dreaded disease.
I couldn’t help but ask Tom how he felt, meeting that person.
Tom stares out his office window, and his eyes are so beautiful, romantically blue, framed with creases of worry. The eyes of a priest. He turns back to me with an answer. “Here was a young man who was going to find out from a doctor the next day that he had AIDS,” he manages. He starts tapping his coffee cup again, and he bows his head reverently. “And he was about to be told that he was going to die.”
Tom never saw the young man again.
People with AIDS became more common at the shelter before long. Tom got to know the regulars, and they began to ask him to perform their funeral services.
“They just wanted to know they would be buried,” he says quietly. “They didn’t want or need anything religious. Most of them were estranged from their families, drug abuse, that sort of thing. I think they were embarrassed to reach out to relatives. Sometimes, when they died we would find a member of the family to come, but usually it was just me and the departed at the gravesite.”
The burials were performed at unmarked graves in a lonely section of Baltimore Cemetery. The caskets were as charity required, simple wooden boxes, and they always contained a body. The funeral home would not cremate someone who died from AIDS because they were afraid of poisoning the air.
“I would always conduct the service out loud,” says Tom, now sharing the sacred details. “I would speak about the departed, and say what I knew of them, about where they were from. And then I would ask if anyone present had been harmed by the departed…”
I imagined Tom, in his vestments and alone in a forgotten graveyard, asking intimate questions out loud to the grass and the trees and the disinterested silence. “I would say that if the departed had harmed anyone,” he goes on, “for that person to please forgive them.” Tom’s voice falters. “And then I would ask the departed to forgive, too. I would tell them, ‘you’re on the other side now. Let it go.’”
“I think they just didn’t want to be alone,” Tom says, and now he looks at me without regard for his tears. “We don’t do this alone.”
Because of you, I think to myself. They weren’t alone because of you, Tom.
“I’m so sorry,” he says, again, wiping his face. “I haven’t talked about this in so long.” He considers the faraway scene he has conjured, his graveside questions to no one, and then adds, “It was the most important, meaningful thing I have ever done.”
I wonder aloud if the experience bolstered his religious faith or challenged it instead. He looks surprised by the question. “Well,” he answers after a moment, “I believe it strengthened my faith. Yes.” I want very much to believe him.
Tom left Catholic Charities, and the priesthood, not long after he conducted the last of his burials for the homeless. A decade later he joined Moveable Feast and embraced its mission to provide sustenance for people in need, people like those to whom he once ministered.
Tom’s fellow staff members know little about his life a generation ago. Most of them aren’t aware of the aching memories beneath the calm surface of their sensitive and capable boss. They may not fully understand why Tom leaves the office once a month to distribute food personally to homebound clients.
But they will tell you that when Tom Bonderenko returns from those deliveries, he always has tears in his eyes.
(I was struck when Tom said to me, “No one has asked me about this in a really long time,” because there are so many more stories out there for the asking. We only have to reach out. I hope you take any opportunity to have a conversation with someone “who was there.” This history must be chronicled and preserved. — Mark)
FRIENDS: I have become so impressed with Moveable Feast, so much so that I am riding 140 miles to raise money for them. If you enjoyed this profile on their director, or you just love me in general, I urge you to visit this link and make a donation of any amount. 100% of your gift directly benefits their clients!
Wednesday, January 6th, 2016
They come from nearly every corner of the world. They are engaged in local communities and on the international scene. They include mothers, artists, a fugitive, a performer, and a drug smuggler. They are speaking out, acting up, and in some cases risking their personal safety and liberty.
They are the 16 HIV advocates to watch in 2016, and they inspire and humble me. It is such a privilege to share their stories with you and highlight their important work. Their twitter handles and other social media links are included whenever available; I urge you to follow them so these advocates can inspire you all year long!
And now, it is my honor to present…
Big Bear Lake, California
Straight men living with HIV aren’t unicorns. They do exist. But being public about their status means facing an additional layer of ignorance. Joshua Middleton has every intention of changing that. “I’m putting a face on the heterosexual HIV positive male that is often silent in this fight against HIV,” says the 25-year-old Californian. “I want to show the world that there is always hope.”
Joshua has started his own blog, contributes to TheBody.com, and has dived into the HIV advocacy arena with vigor and youthful enthusiasm. He has become an avid supporter of PrEP, uses his fluidity in multiple languages to share HIV messages, and wants to pursue a law degree for the express purpose of defending those being unfairly prosecuted by HIV criminalization laws.
“He is a loving soul,” says Maria Mejia, the popular social media personality and HIV positive advocate. “He represents a new generation of activist and I am always so proud to see a young heterosexual male stepping out of the HIV closet.”
“Sitting on the sidelines is not an option for me,” says Joshua. “I’m going to be a driving force until the day when HIV becomes yesterday’s news.”
If and when Kenny Brandmuse returns to his home of Lagos, Nigeria, the reception might not be a welcome one. Shortly before he left two years ago (escaped might be a better word), he was receiving threatening phone messages from anonymous strangers. “They wanted me punished for my sexuality,” says Kenny. “I was already being investigated by the court, and I had to stop attending the hearings because the unfriendly crowds outside the court were becoming larger.”
The threat to his safety became too great, so Kenny managed to get to the United States by seeking an advanced degree at a Baltimore college. Then he found the ideal job – and a work visa – with the Baltimore Health department to design programs for gay black men that address HIV stigma. He loves the work but can’t help but feel anxious about the future, once the visa ends. “It’s like walking on needles,” Kenny says.
Part of his troubles in Nigeria were due to Kenny being an outspoken gay men living with HIV. Kenny founded Is Anyone In Africa?, an online community for African gay men and those living with HIV. It has helped over 500 men and women receive care without fear of being outed since being launched only one year ago.
For 2016, Kenny has a simply goal: to see a more empowered gay community living in homophobic Sub-Saharan Africa.
Pioneering African gay rights clergyman Jide Rowland Macaulay, founding pastor of House of Rainbows, has a unique understanding of Kenny’s journey. “Kenny coming out about his sexuality and HIV status has made many of us come to a place to be realistic and reconcile the odds against discrimination,” Jide says. “As a child of Nigeria, he has by default positioned himself carefully as heroic, it is my hope that the nation would find in her heart to celebrate him.”
Whether or not Nigeria is ready to celebrate the return of Kenny Brandmuse remains to be seen. His work visa expires in 2018.
(Photo credit: Olubode Shawn Brown)
If the photo of Greg Owen strikes you as sexually provocative, then he’s just doing his job. The London-based advocate likes starting conversations about sex. “It is incredibly important for us as gay men to remain not just sex-positive but to keep reaching and working towards a complete sense of well-being. Emotional, mental, sexual and social,” says Greg. “When we are looking after ourselves, we become more resilient in dealing with the curveballs that life sometimes throws.”
Greg faced a major curveball only months ago, when he decided to begin taking PrEP himself (because Truvada as PrEP isn’t yet available in the United Kingdom, Greg acquired the drug from a friend who had stopped taking it as an HIV treatment med). Everything was in place, until Greg got tested before beginning PrEP and discovered he had become HIV positive since his previous test. His own decision to start PrEP was just a few months too late. His idea to write and share his own “PrEP Diaries” instantly became his “Diagnosis Diaries.” His activism did not skip a single beat, culminating with his popular site, “I Want PrEP Now.”
Gus Cairns, the enormously influential editor of AIDSMap, is duly impressed. “What I particularly like about Greg is that although he knows what he’s doing, he is conspicuously not a saint,” he says. “He knows instinctively that the best way to sell HIV prevention is via sex, not by finger-wagging about it. He lives his life rather nakedly in public and is both an inspiration to others but also, now and then, a burden to himself because of it. I follow his activist career with a paternal eye.”
Joey Joleen Mataele
Nuku`alofa, Kingdom of Tonga
In Tonga, when a transgender person (known as “leiti”) is seen walking down the street, someone might use a cruel shorthand to refer to them. They simply call them “AIDS.” It is in that discriminatory environment that Joey Joleen Mataele founded the Tonga Leitis Association in 1992, and she hasn’t stopped fighting for her community ever since.
An active figure on the HIV awareness scene, Joleen has witnessed firsthand the harassment and discrimination suffered by LGBTIQ people in Tonga and the South Pacific. But Joleen had a not-so-secret weapon: her own visibility as a singer and entertainer. “The culture of the pacific is open to humor, song and dance,” Joleen says. “So, I founded the Miss Galaxy Queen Pageant to raise awareness and to support our community.” The pageant event became an enormous phenomenon, raising crucial funding and even garnering the support of Her Royal Highness Princess Salote Lupepau’u Tuita.
Joleen, who is also raising five adopted children at home, is just as ambitious in her goals for 2016. “I want to strengthen the Tonga Leitis community advocacy to effectively address the health, rights and well-being of Tongans and Pacific Islanders of diverse sexual orientations and gender identities,” she says, “and to provide an inclusive environment that celebrates diversity in all forms.”
“Joleen has been a beacon of hope for those living with HIV and AIDS in the region,” says Resitara Apa, former secretariat of the Pacific Diversity Network. “She works to ensure that the people of Tonga are educated about HIV so they stop discrimination and start caring and loving those living with HIV. Keep an eye out for her in 2016 and see her make changes for those who have no voice.”
Winter Haven, Florida
The Positive Women’s Network USA (PWN USA) could easily generate an activist list of their very own, considering how ferociously powerful the organization has become in recent years. One advocate who has benefited from their inspiring female power is Floridian Kamaria Laffrey.
“More and more women are coming out of the shadows,” Kamaria says, “and helping to break down misconceptions of HIV.” Her work with PWN USA, We Make the Change Florida, and as part of a strategy team with The SERO Project to repeal criminalization laws, is keeping her schedule brimming with advocacy activity. “I am continually fueled to find ways to share purpose beyond pain when issues of criminalization, reproductive injustice, and overall stigma prevent people from seeking treatment, staying in care and living the abundantly full life they deserve.”
Kamaria credits her religious faith for getting her through her diagnosis in 2003. “Being a woman of faith has often made me feel torn in what I view as a really sensitive culture. In the faith arena, I feel that many layers of HIV aren’t addressed, just those that feel less controversial,” she says. “And outside of the faith world, I sometimes feel as though I am not taken seriously because of my beliefs. But I have hope for change.”
In 2016, Kamaria will be focused on making her organization emPOWERed Legacies officially a non-profit, completing her book, Chasing Waterfalls, and making a mission trip to Haiti.
Tami Haught, the SERO Project Training Coordinator who led the fight that successfully updated Iowa’s HIV criminalization laws, believes Kamaria’s spirit may be her most valuable tool as an advocate. “Kamaria has so much energy, her smile lights up a room,” Tami says. “Her spirit and resolve are inspiring, and she is a power to be reckoned with in Florida.”
German activist and filmmaker Nicholas Feustel is committed to his PrEP advocacy body and soul. In fact, with no other options available, he is using his body as a quality control measure.
Nicholas has already made an enormous contribution through his video production work, creating documentaries on HIV criminalization, prevention, and living with HIV. But it was the advent of PrEP that re-energized his efforts, leading to his documentary on the groundbreaking PROUD study on PrEP. Even so, he still saw roadblocks to bringing the drug to Germany.
“I realized there is a big language barrier,” Nicholas says. “All the latest and useful information comes out in English first. So I translated articles, wrote my own, and launched the first German website on PrEP. I’ve been trying to make people here in Germany understand what PrEP is all about, that it is so much more than just taking pills.” As a direct result of Nicholas’ efforts, Germany’s leading AIDS service organization, Deutsche AIDS-Hilfe, is pro-PrEP after a period of skepticism.
But a huge barrier remained: Truvada as PrEP is not approved in Germany. That’s when Nicholas got really creative.
Nicholas learned he could legally import, without a prescription, a generic version of Truvada from India if it was shipped to the United Kingdom. He retrieved it there, began the regimen himself, and then had his blood levels tested for Truvada’s active ingredients to be sure the generic version was legit. It was. Anyone familiar with early HIV treatment activists leaving the country in pursuit of effective medications will appreciate Nicholas’ ingenuity.
Edwin Bernard, the internationally renowned coordinator of the HIV Justice Network, holds Nicholas in a special kind of awe (in a match made in HIV advocacy heaven, the two are longtime partners). “Nick always goes the extra mile in his PrEP advocacy,” Edwin says, “including turning his own body into a political petri dish and posting his own drug blood levels online whilst on cheaper generic Truvada.”
The staggeringly intelligent Canadian Ian Bradley-Perrin likes to figure out how systems work – and why they allow access to certain people while others are left behind. Lucky for us, the PhD student in Sociomedical Sciences at Columbia University in New York is applying it to the healthcare of people living with HIV.
“I’m interested in how social movements shape who gets a seat at the table of policy making,” says Ian, “and how class, gender, race, and health intersect to produce particular understandings of the needs of HIV+ people.”
Ian is also fascinated with the history of the HIV epidemic, and the “historiography of AIDS” in particular. “It’s the study of how the history of HIV/AIDS and the artistic and symbolic products of activism around the issue get written,” he says. “What are the narrative trends, tropes, and what is missing. Essentially, instead of just the story of AIDS, it’s the history of the way we tell the story of AIDS.”
Ian will publish much of this in various papers in 2016. He will present on the topic of stigma and public health at Columbia this year, and is applying his knowledge to an initiative investigating community organizations in the Deep South and how the CDC funds them.
“Ian has an incisive ability to see the interconnections between the disparate social, cultural and policy implications of living with HIV in a post-HAART world,” says Avram Finkelstein, founding member of the Silence=Death and Gran Fury collectives. “He has already done significant work around HIV criminalization in Canada and spearheaded complex conversations about the recent attempts to construct an HIV/AIDS history in the midst the pandemic.”
If you talk to anyone who works with communities at HIV risk in the Asia Pacific, the conversation will quickly turn to the work of Midnight Poonkasetwattana, the extremely busy head of the Asia-Pacific Community of MSM Organizations (APCOM) in Bangkok, Thailand. In a region in which a huge portion of new infections are among gay men, he has his work cut out for him.
“At the heart of HIV response is the need to recognize the rights of people regardless of their sexual orientation, gender identity and expressions,” says Midnight. “As a gay man this is important to me. In the Asia Pacific region, gay men and men who have sex with men (MSM) will account for 50% of new HIV infection in 2020 – we only have a small window to avert this.” APCOM has stepped up HIV testing and outreach to younger MSM and transgender youth.
“What keeps me going is the desire to see change,” Midnight says. “I want to see strong community organizations that are being recognized and treated as experts; not just as rhetoric that we normally hear. I want to bring in new and younger people to the movement to form new responses and ensures that we keep apace of the changing dynamics and that we are changing hearts and minds.”
Chris Beyrer, the current (and first openly gay) president of the International AIDS Society, has great confidence that Midnight will be a force for change in 2016. “Midnight is a dynamic emerging leader,” says Chris. “He is leading the community charge for sex positive PrEP programming in the region—where not a single Government is currently providing PrEP through national health systems. He’s out loud and proud, and a great voice for our global community.”
Nearly ten years ago, Lizzie Jordan became a mother, a widow and tested HIV positive all within an 18 month period. So, she left her London fashion career and returned to rural Lincolnshire to be near her family. She did not yet know that her personal tragedy was forging an activist with an important purpose.
As a single mother to a grieving child, Lizzie wanted to find resource and training for her child’s primary school. How could she help her child’s teachers, much less her classmates, learn to speak openly and compassionately about HIV?
Joining forces with friend Naomi Watkins, the pair sought to do something about the “uncomfortable silences” young people often felt when discussing sensitive subjects with the professionals involved in their lives. After months of planning, their agency Think2Speak was founded to provide age-appropriate guidance and support on issues such as mental health, bereavement, abuse, and yes, HIV and sexual health.
In the year ahead, Lizzie is “looking forward to working with schools, throughout the UK, encouraging young people, and those working with them, to learn and discuss responsible sexual health.”
Tom Hayes, the activist and editor of the online magazine Beyond Positive, is both a friend and a fan. “Lizzie is a great advocate because she has such passion for what she does” Tom says. “She’s such a kind, warm and generous person. She set up think2speak all whilst running her own marketing company. Impressive isn’t the word.”
When you visit the Twitter page for Robert Garofalo, it isn’t really a page about him. It’s all about his dog, Fred. And that is the first thing you need to know about Robert’s activism.
The Professor of Pediatrics at Northwestern University has devoted his career to the care of HIV+ adolescents and has done a fair amount of HIV prevention interventions for young men who have sex with men and young transgender women. But let’s get back to the dog.
Robert founded Fred Says to raise money for agencies across the country that care for HIV+ young people. “I wanted to do something that was personal and creative,” says Robert, “and that tapped into the gratitude I had for my dog, Fred, who quite literally saved my life after my own HIV diagnosis in 2010.”
The photo essay project When Dogs Heal, launched in 2015, was the result. “Our hope was to change the narrative about HIV to be about love, hope, survival and thriving while living with HIV — all while giving credit to the healing powers of our pets,” says Robert. “Our hope in 2016 is to turn When Dogs Heal into a traveling art exhibit and to turn the project into a book.”
Charles Sanchez, the writer and star of the web series Merce, which features a lead character living with HIV, knows a little something about employing creative talents as an advocacy tool. “Sometimes a dog is more than just a man’s best friend, but also his best medicine,” says Charles. “Rob’s project has the potential to change people’s minds about what someone with HIV looks like. His work inspires me.”
(Photo credit: Jesse Freidin)
Auckland, New Zealand
Charlie Tredway has experienced his share of HIV stigma. “I’ve had people using my positive status as a weapon against me and been abused online and felt undateable,” says the activist and staffer at the New Zealand AIDS Foundation. His response, though, has been to only increase his visibility as a person living with HIV. As far as Charlie is concerned, the strategy has worked. “Since going public it has weeded out the ignorant,” says Charlie. “The only way to combat that stigma is through honesty and making HIV personal and visible.”
Charlie has personally backed up his theory, working with the Aussie organization The Institute of Many as a senior moderator and appearing in their cheeky “Wizards of Poz” social media campaign (as Dorothy, no less).
Coming to this place of transparency hasn’t been an easy yellow brick road for Charlie. “I didn’t have proper follow up after my diagnosis and wasn’t engaged in any services or support or linked into adequate care. I just completely dropped the ball because I felt healthy.” Only after several years did Charlie turn things around. And it was then that he realized that no one could make him feel badly about himself without his consent.
Looking back, Charlie turns a critical eye to New Zealand’s policy of not treating HIV patients until their t-cell count falls below 500, something he feels may have kept him from care for too long. “It is stupidity of the highest order,” says Charlie. “Not only does it going against WHO recommendations, it also takes away the HIV positive person’s right to take ownership of their health and start treatment.”
That kind of candor has been characteristic of his advocacy. “I am someone who consistently puts my foot in my mouth,” he says, “and yet I have a platform to speak publicly on important issues so there is always a small fear that I will cock it up somehow. Luckily, I have amazing mentors and peers who encourage me to focus on my own truth.”
Those mentors include Australian activist Nic Holas, the founder of The Institute of Many. “What I admire most about Charlie is his tenacity,” Nic says. “He is a fiery little SOB who stands up for the little guy, but also challenges the victim mentality so easily adopted by many in our community.”
São Paulo, Brazil
Since testing positive at the age of 18, Brazilian activist Diego Callisto hasn’t wasted any time making an impression. The driven young man with the piercing green eyes has focused them squarely on tracking and treating the HIV epidemic, quite literally around the world.
Diego is a member of the Youth Task Force of UNAIDS and the Y+ Leadership Initiative. Although Diego is still polishing his English language skills, his passion is crystal clear. “I promised myself following my diagnosis that I would devote to the fight against AIDS,” he says. “Even losing boyfriend and dear friends, I follow through, willing to find more strength and determination to have a world free of stigma and discrimination against AIDS.”
Diego sees HIV as a “human development problem” that must be addressed through programs like the Sustainable Development Goals of the United Nations global agenda. “HIV requires mobilization of all sectors of society and advocacy for human rights and to combat stigma and discrimination directly,” says Diego. “We must also strengthen discussions involving the implementation of PrEP as a measure of primary prevention in the context of combination prevention. PrEP is key to reducing new infections and is a great strategy.” Strengthening this agenda is his goal for 2016.
“Diego Callisto represents the new generation of AIDS activists,” says Mariângela Simão, Director of Rights, Gender, Prevention and Community Mobilization for UNAIDS. “As a young person living with HIV, he brings a very much needed message of hope to other young people living with HIV in Brazil. At the same time, he has brought the Brazilian voice to a different forum. We need more leaders like him.”
All Cassie Warren wants for 2016 is a cute mobile van.
The Youth Health Benefits Counselor at Howard Brown Health Center is happy to explain, and with great persuasion, that a mobile van represents many of the issues relating to providing health care to young people. “I think if we want to make PrEP, hormones, and birth control more accessible to young people we have to reduce the number of things you have to do to get it,” Cassie says, “and we have to do it in a youth-centered environment. We have to bring it to them.”
But wait. Cassie isn’t done making her case. And she even broadens it. “There are a lot of folks out there who think young people can’t be adherent or don’t care about their health,” she says, “and those folks have absolutely no business providing care to young people. We need to look at the structural barriers and find ways to reduce and eliminate those.”
Cassie take her job helping young people navigate healthcare systems personally. “My work is rooted in a deep love for community and uplifting that love against systems that aren’t,” Cassie says. “Many young people experience trauma by the U.S. medical system. So, until we get real healthcare reform, you do what you can to create a safer space for folks to get what they need, and to feel celebrated and autonomous in their bodies.”
Jim Pickett, the HIV prevention advocate at AIDS Foundation Chicago who has a global reputation for innovation, is deeply impressed with his home town colleague. “Smart and tenacious, Cassie Warren is an advocate we all should be watching if we aren’t already,” Jim says. “Everything she does is rooted in a strong sense of community, social justice, and human rights. She’s equal parts thoughtful and fierce, and Chicago is so lucky she is here moving mountains!”
“I have felt unsafe for the last two years,” says Bogdan Globa, director of the Ukrainian charitable organization FULCRUM. “We have more radical people and political party. I’m regularly getting threats through the mail and on social media. Sometimes it feels hopeless, but I try to power through to my goals.”
Bogdan has put himself on the line before. In 1993, he became the first openly gay man to make a speech from the parliamentary rostrum of the Verkhovna Rada (imagine a gay men testifying to the Unite States congress). His remarks were candid and deeply personal. “Being an open gay at the age of 16, I went through all kinds of discrimination,” he said in his remarks. “I was bullied and abused in school, I got driven from my own family… I found the strength and courage to go through it, and today I use every opportunity to openly and honestly say to you about it. Unfortunately, a lot of young guys and girls do not find the strength to fight in the Ukrainian reality, and these stories may end with tragedies.”
Bogdan doesn’t want one of those tragedies to be further AIDS deaths, but there are enormous barriers in a country where being publicly gay can lead to humiliation, discrimination, or worse. “We are trying to change the legislation to have HIV testing at home which may attract more gays to know their HIV status,” he says. In 2016, Bogdan is behind plans to launch a home oral HIV testing kit, which he considers a “formidable breakthrough” in getting a handle on the epidemic in Ukraine.
“Bogdan has steadily and fearlessly campaigned for the rights of LGBT community in Ukraine,” says David Furnish, Director of the globally influential Elton John AIDS Foundation. “Most, if not all, improvements in LGBT rights in the last four years can be linked to his involvement.”
When Masonia Traylor tested HIV positive during a routine medical visit in 2010, she was simply shocked. She didn’t feel she was facing her own morality, though, as much as a “spiritual death.” She lived in such a state of anger, at having become infected, at every person she ever trusted, and even at herself as she second-guessed every choice she had made. It was a dark time that produced a surprisingly sunny advocate.
The 27-year-old mother of two has tremendous enthusiasm for her advocacy today, focused on population she relates to: youth at risk. It is widely known that in the United States, an estimated 1 in 5 people living with HIV do not know they are infected. What is less known is that among those living with HIV who are between 13 and 24, more than half do not know they are infected. It’s no wonder Masonia is so passionate about reaching them.
“Equipping youth with knowledge and awareness of the HIV/AIDS epidemic is what it will take to stop new infections,” Masonia says, who devotes her time volunteering for a variety of HIV agencies and maintaining an active presence on social media. “HIV is manageable, treatable, but most of all preventable.”
None other than the formidable Luvvie Ajayi, the social media sensation and founder of the Red Pump Project, believes Masonia has what it takes to deliver a message to young people. “Masonia has turned her pain into power by telling her story so others can know the faces behind the numbers,” says Luvvie. “She is one to watch in 2016 because her work is going to touch more lives and make more impact. I am so inspired by Masonia.”
Longtime HIV activists don’t always slip gently into the background after having made their contribution a generation ago. Sometimes advocates like Rick Rose get a second (or third) wind and re-dedicate themselves to HIV advocacy.
On World AIDS Day in December of 2015, Rick was so inspired by the work of the Philadelphia Center in Shreveport, Louisiana that “I officially recommitted myself to the battle,” he says. Rick has lived in Louisiana for eight years, but his own HIV advocacy goes back thirty years. As director of the AIDS Mastery Foundation in Los Angeles in 1993, he worked hand in hand with the first Miss America to have AIDS as a platform, Leanza Cornett.
“Like many of us living in the throes of the pandemic, I needed a break,” Rick says. “That break lasted 19 years too long.”
Rick is focusing his efforts on the health disparities common in the South, and the impact HIV is having on communities of color. And that means frank conversations. “The South can no longer hide behind congenial traditions and mock religious beliefs,” Rick says. He’s also looking forward to documenting the stories of people at risk in the South through podcasts and other new media.
Miss America 1993, Leanza Cornett, remains a fan and a friend more than twenty years after her reign. “Rick is absolutely one to watch in 2016,” says Leanza. “Even now, he is spearheading round table workshops focused on women of color and HIV. I am so proud of Rick and his work, then and now.”
Monday, December 21st, 2015
Each year, several hundred people living with HIV – primarily gay men, with a happy sprinkling of straight women and our supporters – embark on the HIV Cruise Retreat (“The Poz Cruise”) for a week of fun and frolic on the high seas. The event started with a group of HIV positive friends and has grown enormously over more than a dozen years. The week is organized by one travel agent and a team of dedicated volunteers (and that includes me as one of the hosts and MC).
The days and nights are packed with exclusive shore excursions, private parties and all the perks of being aboard a large passenger ship — but nothing can compete with the freedom of making new friends without fearing HIV disclosure or stigma.
Here are five things I have learned aboard the HIV Cruise Retreat.
Poz guys are as educated about our condition as ever before, and we’re no longer clamoring for the very latest bits of information. Gone are the medical update lectures that were once a staple of the week-long Poz Cruise, replaced with more socials (like the infamous Red Party, right) and events like the Dating Game.
2. When searching for friendship, cast a wide net.
Years ago, the Poz Cruise provided separate events for the gay men and the (mostly female) heterosexuals. It just didn’t feel right to be kept apart. The gays actually loved the sense of family the women brought onboard, and the women loved our joy and uncanny ability to nail loungewear. The groups joined forces, and today some of the deepest bonding has nothing to do with sexual orientation or any of the other ways in which we often separate ourselves from potential friendships. It’s an important lesson for us all.
3. A zip line is the great equalizer.
It does not matter if that hunk you have been cruising by the pool puts the mucho in macho. When you have been pushed off a wooden platform a million feet above the ground and are whizzing across a thin steel cable, everyone screams like a girl. Not that there’s anything wrong with that. (There’s some rather acrobatic zip lining happening in the cruise video, above.)
Growing older is never a picnic – and that goes double for a gay man – but long-term HIV survivors have additional challenges ranging from survivor’s guilt to post-traumatic stress disorder. “Long time survivors really love the idea of getting away from it all with friends who really get it,” said Paul Stalbaum, the travel agent who has organized the Poz Cruise for the last 12 years and is a longtime survivor himself. “That may be why so many ‘men of a certain age’ join the Poz Cruise each year,” Stalbaum added. “The older survivors bond over shared histories while the younger cruisers have a ready-made group of mature friends and mentors.” If everyone rallies together for an afternoon of mud masks on the beach (above), all the better.
5. Sharing our greatest challenge is the very thing that can help someone else.
Before I said a word to other cruisers, I already knew them. Or at least, I knew a large and significant part of their lives. Being in each other’s company, whether or not the topic of HIV came up in conversation, brought a kind of immediate intimacy that is difficult to describe. It reminded me that the meaning of life is to take that about which we have the most shame or difficulty and use it as a tool to help someone else.
The 2016 HIV Cruise Retreat is a Caribbean voyage from Ft. Lauderdale, October 29 – November 6th. Find out more here or contact agent Paul Stalbaum at 888-640-7447.
Wednesday, December 9th, 2015
(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 70 I have produced over the years. Enjoy!)
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).
Tags: acting, Aging, aids, culture, drag, family, gay, gratitude, help others, hiv, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | No Comments »
Wednesday, November 25th, 2015
A variety of gay men spill their guts about their lives and HIV diagnosis. They are bracingly honest, sexually explicit, heartbreaking and hilarious. They are the men of The Infection Monologues, a theatrical event getting a 10th Anniversary staged reading at the Human Rights Campaign this Wednesday, December 2, 2015.
The event is FREE, with food and drinks starting at 6:00pm and the performance at 7:00pm. You can RSVP right here.
Created by the enormously influential gay anthropologist Eric Rofes (Reviving the Tribe), and written by Rofes and writer and advocate Alex Garner, The Infection Monologues provides a snapshot of the lives of gay men living in the epicenter of the crisis, and is based on hours of real-life interviews.
Eric Rofes died far too soon, taken by a heart attack in 2006 not long after The Infection Monologues premiered. Alex Garner has continued a respected career as a journalist and HIV advocate, currently leading a national PrEP education effort for the National Minority AIDS Council.
Alex and I had a chat about the play, the politics of barebacking, gay “respectability,” and putting gay sex back into the social agenda.
First of all, Alex, congrats on having this work of art revived after ten years.
Thanks, Mark. We are excited to be able to breathe life into this script again. I always learn something new when I reread it.
Can I give a shout-out to the late, great, gay anthropologist Eric Rofes, with whom you wrote the play? His book Reviving the Tribe changed my advocacy forever. I recently read it again.
I can’t say enough great things about Eric Rofes. None of this would have been possible without his insight and vision. His impact is ongoing and his books changed me, too.
I invited Eric to lead a gay men’s town hall forum in Atlanta in the mid-1990’s. He was the first person I knew to say publicly that bareback sex was critical to his sexual experience. He said it that night, and it was like a bomb went off in the auditorium. I thought the attendees would riot.
Eric was ahead of his time but such a needed voice about gay sex and gay men’s health. Those early years of the bareback debate were so raw and emotional — no pun intended.
I’m wondering if the themes in The Infection Monologues have remain constant, or if we’ve seen any progress at all…
The themes remain constant in so many ways but the world has changed drastically. The themes of stigma, disclosure, dating/relationships, and sex are just as relevant and compelling today but scientific advancements — treatment as prevention and PrEP — have radically changed the landscape.
I don’t think it feels like something is missing. I think it feels like a specific moment in time. The more things changes the more things stay the same. Much of the stigma associated with PrEP is the stigma associated with condomless sex. The bareback debate has simply evolved because of PrEP and unfortunately some PrEP users utilize PrEP as their shield of respectability: “I’m responsible” or “I’m protected so it’s ok when I bareback.” I have zero interest in respectability politics.
The voices in The Infection Monologues are such complete human beings. Funny, flawed, horny, scared. Tell me the process of how those voices came to be.
Eric was a great researcher and he conducted initial interviews of men who seroconverted after 2000. We used that research, as well as my own lived experience to create the three core characters. The additional characters were developed from writers in Los Angeles who drew from their lived experiences.
I’m all about telling the story of what happened to us — and what continues to happen. But these days it feels like so many of our wounds in the gay community are self-inflicted. Is that a fair observation?
I don’t think that is a fair observation. I don’t like that term. So much of our struggles are still institutionalized, whether it’s around homophobia and stigma, poverty, transphobia and sexism, lack of education, religion, etc. I believe we haven’t focused enough on our resiliency. As a community we endured the worst epidemic in modern history yet the lessons from that seem to be unknown. How did we survive? How did we find community, support, hope? How did we lose or find our humanity and how did we decide they were not going to destroy us. Ours is such a struggle of resistance and I think much of that has been understood simply in the modern marriage equality context.
Some advocates draw a straight line from the AIDS crisis to marriage equality. Do you agree?
I do see a straight line but not necessarily in the same way. The advent of anti-retrovirals allowed us to be healthy, presentable, and respectable. The movement could drop the messy, icky part and the part dealing with our sex, and focus on love and respectability. Strategically it was a brilliant move, but the impact was a desexualized movement. We now have the opportunity to make sex, pleasure and intimacy a top priority of our lives and our politics.
In my everyday life, I’m often torn between wanting to “tell the story” at every opportunity of what happened to us, and thinking I should just shut up already. Something about the trauma we experienced comes back to me, in some way, every damn day. So of course, the choice is to keep talking.
Who are we if not a collection of stories? That is art at its core and for those of us who have been marginalized, stories are a way to exert our humanity.
I’m honored I get to read the role of the “older” gay guy in the play. Actually, I’m actually older than the older gay character I am reading. Don’t get me started. I’ll use concealer that night.
(laughs) The “older” gay man is a very important perspective in the epidemic especially because he seroconverted after having lived through the war years. So much great complex emotion there.
Congratulations, Alex. It’s nice having a dialogue about the monologues.
Thanks. And I hope that others will explore creative ways to tell the stories of our complex and fascinating community.
Tags: aids, barebacking, culture, gay, hiv, physical, politics, PrEP, Recreation, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 1 Comment »
Thursday, November 19th, 2015
The subtle moment came during the second segment of Matt Lauer’s explosive interview with actor Charlie Sheen. It impressed me so deeply I actually backed up my recording and watched it twice more.
Sheen had already endured the first segment of his time with Lauer, during which he resembled an uneasy hostage trying to charm his captors. Gone were most of the features of the train wreck we have come to know as Charlie Sheen: the mania, the twitches and glazed eyes, the bloviated pronouncements delivered with the bravado of a crack cocaine messiah.
That public meltdown was in 2011, a millennia in celebrity years. The humbled, visibly nervous man on The Today Show had his back against a wall, forced to reveal his HIV positive status on the eve of venomous tabloids doing it for him.
And so, the immensely privileged actor found himself in a position known all too well by those of us who live with HIV: having to disclose our status and pray to God the response will be at least civil, if not empathetic. Except, of course, Sheen did it under the blaze of studio lighting, with high definition cameras searching for any betraying signals on a face layered with makeup and apprehension.
The moment that transfixed me came after an endless commercial break – several minutes of corporate pigs at the trough, lapping up the ratings slop of Sheen’s misfortune. Sheen had already made his HIV disclosure and had begun building a case against the extortions of his former sex partners and confidantes. It wasn’t the most relatable storyline with which to lead, but it was presented through a veiled, undeniable personal agony.
And then, Lauer announced he had messages from Twitter he wanted to share, fresh off the internet presses, containing reactions to Sheen’s HIV disclosure from the town square of cyberspace. Sheen’s face changed. On live television, in front of a blockbuster audience the world over, Charlie Sheen would now hear exactly what people thought of him, his story, and most unnervingly, his HIV status.
Lauer began to read. “Laura says, ‘You have brought me to tears. I am profoundly touched by your honesty…’” The camera had moved to a graphic of the tweets and Sheen was not visible. Lauer was continuing with a second message. “For the first time in a long time you can be proud of yourself,” he read, “Now you’re really winning.”
The camera cut to Sheen, who fumbled out a “wow… that’s lovely,” although he still seemed to be holding his breath. Lauer continued with a third message. “Now you own your truth,” the message read. “Good on you, Charlie Sheen. Respect.”
And it was in this moment, as Lauer finished the third of three consecutive responses, all of them supportive, that the camera revealed something barely perceptible but achingly human.
Charlie Sheen raised his shoulders slightly in a shallow intake of breath, and then let it out, shifting in his chair as if to mask it, while his eyes found a place of exquisite, emotional relief that no mere actor could ever muster.
It was the sigh of a thousand gulps of air, the release of months of secrecy and loneliness, of doubt and the very real fear of what lies beyond the words “I am HIV positive.”
It was then that I recognized the man on the television screen. He was every HIV positive person who has ever had to make a revelation that holds the acceptance of our loved ones and co-workers and friends in its precarious balance. And, at least in that instant, fate was merciful to Charlie Sheen.
The backlash, as if duty bound, has begun. Much has been breathlessly reported about the veracity of Sheen’s statements, the lawsuits, the blame and recriminations, and even his residual tiger blood bluster that he might be the man to deliver a cure. None of the nonsense to come can nullify the fact that the critical words “undetectable viral load” have been written, spoken, and defined more in the last few days than in the entire history of HIV advocacy.
There will be plenty of time to assess the fallout of Charlie Sheen’s disclosure, for better or worse. For now, I remain struck by the eyes of a vulnerable man during his singular, desperate moment of grace.
And in them, a glimmer of hope for us all.
There has been so much inspiring public advocacy and reporting amid the obscene hysteria of much of the media firestorm. Some of the media pieces I especially appreciate include a USA Today piece on this teachable moment, a Daily Dot article on the insanity of HIV criminalization, Lambda Legal’s critical reference guide to speaking about Sheen, the CNN Headline News segment I did with Rae Lewis-Thornton about what it is like living with HIV in the here and now, TheBody’s insightful fact-checking of the Sheen interview, and Gus Cairn’s Huffington Post piece about our new, reluctant HIV poster boy. There are surely many more to come.
Friday, November 6th, 2015
Some years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He could tell my HIV status by my face.
I had The Look. The sunken, wasted cheeks of someone living with HIV. It became a common manifestation in the 1980’s and persisted until the medications that caused the condition, known as facial lipoatrophy, were changed or abandoned for better treatment. (That’s me, right, in 2008.)
Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4t and ddi more than twenty years ago.
I’m one of those long-term survivors. I am proud of my history advocating and living with HIV. But as uncomfortable as it may be to admit, it’s a lot easier to live openly as a person with HIV when you don’t look like it.
When the symptoms began to appear, it meant that the choice to share my status, as an activist or on a personal level, had been taken away. My HIV was written across my face for all to see.
I felt ashamed, and then conflicted. For someone who has been fighting so hard to reduce HIV stigma, what is there to be ashamed of, exactly? Many of the physical signs of HIV treatment – from weight loss to fat redistribution to facial wasting – are worn as battle scars, if not badges of honor, by thousands of people living with HIV. My disease is mirrored in my physicality. What’s wrong with that?
And so, I began a journey that would include multiple visits to a specialist and more than $20,000 worth of various “facial filler” products injected into my face. My biggest advantage was the physician I chose: Dr. Gerald Pierone, arguably the most experienced person in the country on facial fillers and a contributor to TheBody.com. (That’s me, at right, last week.)
Along the way I chronicled my journey through video blogs. They span more than six years, explicitly show the treatments in Dr. Pierone’s office as well as before and after footage, and include a wealth of information and advice about getting facial lipoatrophy treatment, the products involved, and their relative costs.
Here are three of those videos that are probably the most helpful.
A Facial Wasting Update
In this video, below, I chronicle my third visit to Dr. Pierone, who checks up on my progress with temporary fillers Sculptra and Radiesse, and offers his own perspective on my treatment regimen. It is a good introduction to facial lipoatrophy and the treatment available.
I’m Gonna Wipe That AIDS Right Off My Face
Once again I return to Dr. Pierone for a check-up, but this time I inquire about a new, semi-permanent filler now known as BellaFill (formerly Artefill). This video also includes a lot of information about patient assistance programs for the temporary fillers.
Treating My Facial Wasting with Artefill
Switching to this permanent filler, now known as Bellafill, was the best decision I made. No more disappearance of the temporary fillers over time! Although this semi-permanent filler does not have a patient assistance program and can be quite expensive, I must say that the results have been dramatic and long-lasting.
One thing these videos make clear: facial fillers are not the fountain of youth, no matter what The Real Housewives may think. You can clearly see my own aging process through the years in these videos. What they do show, however, is my face as it would have been: aging naturally as if HIV wasting had never been an issue.
If you have any questions, I would encourage you to direct them to Dr. Gerald Pierone in the Ask the Experts forum at TheBody.com. I cannot recommend his expertise highly enough.
And as always, my friends, please be well.
Saturday, October 10th, 2015
This is a clever social media campaign: Healthline, an online health community, has asked people who have been living with HIV to create videos for those who have recently tested positive, known as “You’ve Got This.” Think of it as “It Gets Better” for those with HIV.
Of course, I had to create a video in my own peculiar way — something that demonstrates the sense of humor that has served me well over the course of 30 years living with HIV. Maybe my video will help someone you know.
To be honest, I barely remember testing positive in 1985, when the test became publicly available (my doctor and I estimated my infection may have occurred as far back as 1981). I was already self-medicating with a growing drug addiction — it was Los Angeles, I was young and stupid, and people started dying; cocaine seemed like a reasonable response at the time — and the test result felt like my license to continue using.
Today, it’s hard for me to recall a time in which I was afraid of becoming infected. I only know a life living with the virus, and my fears of HIV itself are long past. So I should probably approach any advice for the newly infected with care. They are experiencing a profound event that happened to me a lifetime ago. I hope my light touch will give them a needed lift or bring them a smile.
It’s easy to make the mistake of assuming new infections only happen to younger people, and I even make an apologetic joke in the video about my being “old.” The fact is, most new infections in the United States happen to people over 30, not under. We might want to check ourselves when we bemoan infections among “these kids today” (although of the various age groups with new infections, those under 30 remains the largest).
To participate in “You’ve Got This” with a video of your own, visit the Healthline site for details. Or leave your own words of advice in the comments section below!
Meanwhile, please be well.
(This post originally appeared in September of 2013, but my advice hasn’t changed a bit — please do consider drag — so I thought I would post this again.)