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.
Sunday, January 19th, 2014
If you’re considering how to best disclose your HIV positive status to everyone you know, here’s one suggestion: learn to sew. Television’s long-running reality hit Project Runway could be holding a spot just for you.
Over the course of a dozen seasons, the fashion competition series has tackled everything from drug addiction to racism to gender reassignment among contestants, and it has hosted more HIV disclosures than any other reality show. The latest addition to the trend is designer Viktor Luna, the contestant who sported the fluttering handheld fan on this year’s Project Runway: All Stars.
Exactly how these disclosures have come about over the years is a study in contrasts, as different as the three HIV positive contestants themselves – and the whims of show producers.
In 1998, season four of Project Runway introduced the world to designer Jack Mackenroth (pictured right), the competitive swimmer, model, and all-around sex symbol who had already been living openly with HIV for 17 years. His casual disclosure during an early direct camera interview during his season showed a man comfortable with himself and his status.
“The producers knew I was positive because we fill out a stack of background information,” Mackenroth told HIV Plus. “They had my entire medical history, like every other contestant on the show.”
Already an HIV advocate at the time, Mackenroth knew the producers would eventually use his HIV as a dramatic device, but “that was fine with me,” he said, “because I saw it as an important tool as well, for HIV visibility and as a chance to fight stigma.”
That opportunity was lost when fate intervened. Before he could disclose to his fellow contestants on camera, Mackenroth developed a serious infection unrelated to HIV that forced him to withdraw from the show five episodes into the season.
“Tim Gunn sat me down and reassured me,” said Mackenroth. “He told me that everything happens for a reason, and in that moment I was like, Yeah, right. I was exhausted and emotional. But the truth is, that show gave me my platform. It worked out great.”
It would be years later until an HIV positive contestant would actually disclose their status to the cast on camera, but when it finally happened it brought all the drama and emotion the famously controlling Project Runway producers could ever imagine.
In 2010, season eight of the series included Mondo Guerra (pictured left), an insanely talented young designer who was as guarded as he was endearing. Although one should be mindful that footage is carefully edited to create characters and increase drama, Guerra certainly seemed like an artist with a painful secret or two.
During a challenge to create an original textile, Guerra designed a graphic print with a conspicuous “plus” sign throughout it. In direct camera segments, he revealed that the design reflected his HIV-positive status but otherwise kept his inspiration to himself, having not disclosed to even his own family at that point.
When pressed on the runway later to explain his design, Guerra demurred again. The judges stared in wonder. The music swelled. Filled with nervous emotion, Mondo haltingly revealed his HIV status as the inspiration for his textile. Viewers saw not only his tears but something more: a humble sort of triumph.
“I feel free,” Guerra said plainly.
Guerra’s disclosure was given generous air time during the episode and was the dramatic centerpiece of the entire season. The moment has been replayed endlessly on YouTube and was shown to a packed ballroom at the 2013 United States Conference on AIDS. It was undeniably inspiring, seemingly spontaneous, and brilliant television.
“Knowing Mondo, I think that happened organically,” said Mackenroth. “Of course, everyone is working nonstop, producing a full season in 35 days. When these vulnerable situations come up, we hardly have time to think it through.”
“When the judges genuinely wanted to know the story behind my print and design, that felt like the right moment,” Guerra told HIV Plus. “So I told them what it really represented and that moment was a turning point in my life.”
If Mondo provided the pinnacle of televised disclosures, the current season of Project Runway: All Stars has given us the most curious presentation of The Big Reveal.
In one episode, designer Viktor Luna (pictured right) and the cast were scampering about, hard at work, and suddenly Luna begins speaking of his great anxiety in voice-over. Something is weighing heavily on him. He takes two designer pals aside and quickly shares his HIV-positive status. His friends say supportive things, they hug, and then they all dash back to their sewing machines as if they’d just had a quick smoke break. Luna’s status is never mentioned again.
Luna’s disclosure, as edited, felt like an afterthought, as if the producers noticed a lull in the excitement and cued Luna to bring on the drama. Producers might have hoped for something touching, but the hurried editing actually minimized the complicated nature of HIV disclosure. Everything about it felt false.
You know we are living in a more fortunate time when the merits of one televised HIV disclosure over another are being argued.
“Regardless of how it’s produced, it’s all a win,” says Mackenroth. “Whenever this or any show combats stigma, the HIV community benefits from it.”
Guerra sees a personal benefit too.
“Personally, it wasn’t until I was open about my status that I started to take better care of myself,” Mondo told us. “For that reason, I applaud Jack’s openness about his status.”
Today, Mackenroth continues his advocacy as one of the creators of the HIV=Equal campaign. Guerra has entered the fashion design stratosphere and is a key player in the Project iDesign Campaign, which encourages doctor/patient partnership. Luna wrote about his HIV disclosure on Huffington Post, sharing the details of his HIV journey that were not included in his Project Runway: All Stars episode.
Nothing is assured, in fame or fashion. Project Runway contestants are often struggling designers who leave whatever jobs they have to compete on the show. For any of them to put their personal lives on the line, to take the sometimes frightening step of revealing their HIV status to the world, takes a special kind of courage.
Many people with HIV may not be fashion designers, but they can certainly relate to that.
(This is a slightly edited version of my essay that originally appeared on the site of HIV Plus Magazine. Jack Mackenroth photo by Stan Madden. Viktor Luna photographed at Mercedes Benz Fashion Week by Fernanda Calfat/Getty Images.)
Monday, December 30th, 2013
The year 2013 was a game changer for My Fabulous Disease, and I want to thank you for your clicks, comments, and shares. I have more confidence as an advocate and a writer, thanks to you, and traffic for this blog more than doubled over last year!
I’m bad at predicting which posts might resonate with readers. My philosophy has always been, “if you build it they will come,” and the rest is up to you. Apparently you have very eclectic tastes, my friends.
In ascending order, the Top Ten Postings of 2013 are…
10. The Inspiring Advocates of the 2013 United States Conference on AIDS. This is a rollicking video recap of the annual event, produced by the National Minority AIDS Council, that brings together the very best our HIV/AIDS service community has to offer. Public health and pharma are there, of course, but I’m always thrilled to meet those who are doing the work on the ground, for local community-based organization working with scant budgets but tons of heart. This video includes a discussion about the generational divide among people with HIV, interviews with multiple movers and shakers, marching bands, and Mardi Gras pageantry.
9. An AIDS Death in the Family. Drawing from my book, A Place Like This, I have revisited the night my brothers’ longtime partner died from AIDS, and the surreal haze that surrounded the occasion. It is about loss, yes, but also about how we cling to social habits during the darkest of times to attempt to normalize things that feel anything but normal. A dying man offering a “parting gift” to me, conversing as if he won’t be gone in a few days, and the dreadful phone calls that a grieving lover must undertake. Yes, it’s rough. But it’s life… and death.
8. Two Minutes of Advice on Testing HIV Positive. 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. There are now quite a few videos in this campaign with a variety of messages, and I encourage you to visit the Healthline site; you might find the message you or someone you know really needs to hear.
7. Probing My Anal Phobia. I cannot believe I told you these things, which might be one reason this essay is a personal favorite of mine. Maybe this is about facing your fears, because I hate talking about… anal things. So what did I write about? Anal sex, cleanliness, colonoscopies, and the most outrageous douching disaster I have ever experienced. Yes, that’s right, I went there. And the results will either have you laughing or finding out how to unsubscribe. Sometimes, I just need to write things that are on my mind and try to block out the fact that my Mom follows my blog. Enjoy!
6. The Increasingly Strange Case of Uncle Poodle. Long before the Duck Dynasty controversy blew up, another popular reality show had an off-camera moment that caused quite a stir. Uncle Poodle, the gay uncle from the reality show Here Comes Honey Boo Boo, came out in a printed interview as HIV positive, and further claimed that he had been infected by someone who did not disclose his status — and who went to jail as a result. The details, however, are murky, and say as much about shame and HIV stigma as they do about criminalization laws.
5. HIV and Gay Media: The Vanishing Virus. I suppose I have a lot of nerve. After having the honor of being included in an invitation-only summit of LGBT media representatives, I spend much of my time at the event hounding them, on video, about why they don’t write about HIV more than they do. Fortunately, the participants were honest, thoughtful, and quite candid in their responses. The event was co-sponsored by the National Lesbian and Gay Journalists Association and the video was featured on the main page of their site, so I suppose all is forgiven!
4. Surviving Two Epidemics: AIDS and Meth. My history of crystal meth addiction and recovery isn’t something I am ashamed of, but I don’t write about it as much as I once did. The whole recovery process feels almost too precious to share. But when I was asked to share my story for an ongoing feature in Positive Frontiers about gay men in recovery, it just felt right. This essay is my truth, and maybe it will speak to someone at a time when they are ready to make a change. For information on crystal meth recovery, visit http://crystalmeth.org/.
3. The Beautiful Sadness of Dallas Buyers Club. If anyone has a chance of stealing away an Oscar from Chiwetel Ejiofor of 12 Years a Slave this year, it is Matthew McConaughey, who is transcendent in this illuminating look at one straight man’s response to the lack of FDA approved HIV medications. Some have criticized the film for not showing the impact of gay activists, but that’s part of the point of the film: this is the story of this terribly damaged straight man, and how his prejudices were (somewhat) overcome through his own advocacy, as self serving as it may have been. You can count on one thing: Jared Leto, who played a transgendered friend, will be taking home an Oscar for Best Supporting Actor.
2 (tie). Stop Bludgeoning Young Gay Men with Our AIDS Tragedy. I thought I could say these things that other folks — HIV negative or young gay men themselves — would be crucified for saying. I was wrong. I got crucified, too. Fortunately for my sensitive ego (yes, angry comments still hurt my feelings), many others understood that our history is important and vital to preserve, but it’s not a prevention strategy for the landscape of today. This was more primal scream than writing for me. Perhaps I should learn to count to ten?
2 (tie). The Private War That Killed Spencer Cox. It’s kind of amazing to realize that Spencer, an early activist with ACT UP New York that went on to found Treatment Action Group, died only last December. So much has been written and done in his honor, including ongoing public forums on either coast that address PTSD among people with HIV/AIDS, and how we as a community can best address their (our) needs. This essay, posted soon after Spencer died, explores some of those issues, including trauma, loss, and addiction, all of which Spencer himself wrote about before his untimely death at the age of 44.
1. Your Mother Liked It Bareback. I had the title before I wrote the piece, and that’s probably a terrible thing to admit, because the title alone incensed people (The Huffington Post, which carries my content regularly, refused to post it at all). Another primal scream put on paper, an outgrowth of complete frustration over our refusal to admit that there are other “protections” against HIV that do not include condoms. Despite applauding those who do use condoms more than once in the piece, I was accused of “promoting” barebacking and received my favorite name-calling moment of the year, as a “vile merchant of death.” Even when faced with the facts about undetectable viral loads, or PrEP, some who read this article fell back on 40-year-old worries: “you could get an STD!” Honey, if the worst we have to fear these days is the clap, then sign me up. That just makes me feel nostalgic.
But wait! The Real Winner of 2013: “The Sound of Stigma.” When POZ Magazine asked me to contribute a cover story on HIV stigma among gay men, I had no idea it would become my most widely read essay of the year, by far, without even appearing on my own site. Even more surprising, to me, because the piece is such an indictment of how gay community turns against its own (“We are AIDS itself.”). The posting of the story on Poz.com has been shared 2,500 times and has more than 150 comments, ranging from emotional to angry to heartbreaking. I am proud and yes, humbled, that the article contributed to such an important conversation.
Have a bright, joyful, and healthy 2014, my friends.
Tags: A Place Like This, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, meth, physician, politics, recovery, serosorting, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Thursday, November 28th, 2013
My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.
There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.
There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”
“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)
“Know Stigma” (I hereby pronounce “stigma” the Word of the Year) is a terrific site devotes to photos and video that challenge our attitudes towards one another as gay, straight, femme, old, poz guys, etc. There are some really intimate, honest videos with people discussing the impact of stigma on all aspects of their lives. “We want to create a conversation around how we treat each other as gay, queer, bi, trans, and straight men,” says their site. “Like everyone, we have our biases and prejudices. Many of us are made to feel invisible because of age, body type or skin color. How can we say what we want without hurting others? How do we imagine our actions and words might make someone else feel?” Check it out.
After a lot of talk about HIV stigma, there is now a project in the United States that wants to actually quantify it and address it through leadership by people with HIV. “The People Living with HIV Stigma Index” has been launched in dozens of countries but only now has received funding to implement it in the U.S. It measures HIV stigma in the lives of people with the virus, and does so by training and employing people with HIV themselves to conduct the surveys. Watch a video of Laurel Sprague of the Global Network of People Living with HIV discussing stigma and this project with Eric Sawyer of UNAIDS.
Tags: Aging, aids, culture, gay, help others, hiv, physician, politics, research, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 3 Comments »
Thursday, November 21st, 2013
Lesley was my closest friend to become sick in the 1980′s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.
But there’s something I will not do. I will not dig up Lesley’s body and beat young gay men with his corpse. Lesley didn’t perish so I could use him as a scare tactic. He wasn’t a cautionary tale. He wasn’t a martyr. He was a man with the same passions and faults as anyone else, and I won’t use his death as a blunt instrument.
Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.
“If their friends all died like mine did, maybe they would think twice before having sex without a condom,” goes a typical remark, drenched in self pity and tenuous logic.
This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.
So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform “duck and cover” drills in case Russia drops the bomb.
To view these young men and say, in effect, “if only you saw all the death that I saw…” is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.
I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet — and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn’t going to win the respect or investment of younger men. It makes us as relevant as old men on the front lawn waving a rake at youngsters.
I take our community history very seriously. I’ve written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can’t wait for the release of Sean Strub’s upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history — and in recognizing that many of us still carry trauma born of that time.
Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the “Let’s Kick (ASS) AIDS Survivor Syndrome” project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.
That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, “people think you only have to take a few pills and that’s it,” we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I’m not going to deny all that in order to advance a fright-show storyline that isn’t my experience.
There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don’t include burying friends or serious health concerns, wasn’t that our goal all along?
Nowhere has our AIDS tragedy mindset done more damage than in the rollout of the unfairly maligned Pre-Exposure Prophylaxis (PrEP), the prevention breakthrough that allows HIV negative people to take anti-HIV medication to avoid infection. It is largely viewed as an alternative to condoms, which has quickly labeled HIV negative men taking PrEP as “barebacking sluts” by people coming unhinged at the very idea of unprotected sex. (Note: I remember when gay sex never involved condoms. It was glorious. I always thought getting back to a place where we had a real choice in the matter was kind of the point.)
There is something about the simplicity of PrEP (a pill a day! no condom negotiation! no guilt or judgment!) that is driving older gay men up the wall, considering their resistance to it and spurious claims of inefficacy, cost, and side effects. Tellingly, younger gay men have voiced fewer objections.
The facts are these: PrEP is at least as effective as condoms when used properly. The drug currently used for PrEP, Truvada, is well tolerated with few side effects. And despite fears and misinformation, it is being covered by insurance providers (do you know of even one claimant that has been denied?). For those without insurance, Gilead, the maker of Truvada, has a generous patient assistance program that allows you to earn a sizeable income and still get the medication.
Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of what we once knew to be true.
The 1980′s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.
May they rest in peace.
My friend and early mentor, Eric Rofes, was an out, gay, kinky, deep thinking anthropologist that wrote the important book Reviving the Tribe, about building community among gay men during the AIDS epidemic, and Dry Bones Breathe, his follow-up work. He was one of the first to write about the value and even spiritual importance of anal sex for gay men and even exchanging bodily fluids (when he said as much at a forum for gay men in Atlanta I organized in 1995, it was as if a bomb went off, such was the hysteria). For a thoughtful overview of Eric’s work and influence, check out a piece from Charles Stephens about the Rofes legacy — and where his worked wasn’t fully realized. Whenever I fear my writing might seem provocative, I think of Eric Rofes, his bravery, and his lasting influence on the work of many of our leaders. Eric died far too early in 2006 of a heart attack. (Photo credit: Markichester.com)
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 33 Comments »
Tuesday, November 12th, 2013
Another year, another magical Caribbean adventure with a happy community of people living with HIV and our loved ones. It could only be the annual HIV Cruise Retreat, also known as “the Poz Cruise.”
We gathered in Miami from around the world, with a record attendance of almost 300 people. There was a couple from Sweden, a guy from Germany, and a family of five from the West coast. The only thing we had in common was the presence of HIV in our lives — but you would have hardly known it from our high spirits and passion for living. When you’re flying through the rain forest on a zip line with a couple hundred new friends, some of life’s worries just naturally fall away.
I have such affection for this group and this event. Maybe it’s because of the pure joy we have in each other’s company, or the fact that no one feels alone. We take care of each other. It doesn’t feel like a modeling competition the way so many gay events do. Where ever we fall on hotness meter, we are all embraced and welcomed by the group. I think that mutual support shines through in my video blog of the event, below.
And that included the more than 50 straight members of our group. While these men and women have conducted their own activities in years past, our group was far more integrated this year because we all really wanted to be. Not only did it add another dimension to our time together, but it added a naughty quality to our version of The Dating Game (we did a gay game and a straight one, one after another). I don’t think anything on board was funnier than the gay men in the audience cheering on the explicit answers from the straight bachelorettes!
I’m still adding new friends to my Facebook page, and some folks, as usually happens, became more than friends. At least one couple was celebrating an anniversary that commemorated meeting on the cruise retreat in the past. The gay and straight couples in The Newlywed Game really battled it out, and a gay couple prevailed (go team!).
I should include my usual disclaimer that neither myself nor any of the other hosts are compensated for our participation in the HIV Cruise Retreat. I pay for my cabin like everybody else. The reason I have attended now for four years and serve as M.C. is because I support anything that builds community and lifts up those of us searching for acceptance and social support.
I also know how privileged I am to afford this type of vacation (rates begin around $600). Frankly, I send our cruise director Paul Stalbaum small checks throughout the year so the expense doesn’t sneak up on me. I hope you will forgive me for sharing my good fortune and please know that my intention is to encourage you to seek joy where ever you might find it.
Get ready for next year: it will be the event’s 10th Anniversary and everything about the vacation is improved, from the cruise line (the #1 ranked Celebrity Cruises) to the exciting ports of call leaving from San Juan, Puerto Rico. Check out reviews of The Celebrity Summit here by former passengers!
The 2014 HIV Cruise Retreat will take place November 1-8, 2014, and you can find out more by visiting www.HIVCruise.com (the site will be updated with 2014 info soon) or simply contact our travel agent and cruise director Paul Stalbaum (888-640-7447). Paul is living openly with HIV and began leading support groups for people with AIDS more than 20 years ago in Ft. Lauderdale. He is our advocate and champion when it comes to getting us the best price and exclusive perks while on board.
Thanks for watching, and please be well.
Tuesday, October 22nd, 2013
Just because it’s over
doesn’t mean it didn’t happen…
Doesn’t mean it wasn’t beautiful,
even with the pain.
– “Beautiful Sadness,” sung by chanteuse and gay favorite Jane Oliver
In the first minutes of Dallas Buyers Club, the astounding new film about the darkest years of the AIDS crisis, rodeo cowboy Ron Woodroof (a gaunt and barely recognizable Matthew McConaughey) is punched in the face. He has it coming. The self-serving crook has a lot of enemies.
The blood spills from his mouth and glows a bright crimson, an almost clownish contrast to his drained, ghostly pallor — which itself is evidence of a raging HIV infection he has yet to discover. Another gash on his forehead is a sickly collection of reds, and unlike most movies in which injuries disappear by the next scene, the wound remains. And remains. For many scenes thereafter, the blood on Woodroof’s forehead is in full view, a disconcerting reminder of what lies beneath, until you wish he would just put on a bandage already.
But Dallas Buyers Club isn’t interested in making the truth very pretty. A river of infected blood runs through it. So, too, does practically every other bodily fluid, along with bruises that won’t heal and purple skin lesions and flakes of dry, reddened skin. And that’s kind of beautiful. Because that’s what AIDS looked like in 1985, and it’s been ages since we have fully remembered it (this movie doesn’t concern itself with the modern day notion of “living with HIV,” since having the virus in those days typically meant an AIDS diagnosis and fast and efficient death).
I have never seen AIDS shown this way in a film. And of all the movie portrayals of the disease, from Parting Glances to I Love You Phillip Morris, nothing else has captured the ugly physicality of the disease like Dallas Buyers Club. Even the tearful hospital bed goodbyes in Longtime Companion seem overly romanticized by comparison.
The based-on-a-true-story concerns Woodroof, a hard living cowboy and drug addict, who must face certain death and the cruelty of his redneck buddies when he tests HIV positive. Woodroof also lives the sheltered life of a southern homophobe, so watching him negotiate the AIDS community terrain of queers and drag queens is fascinating viewing and provides some of the surprisingly plentiful humor in the film.
But Woodroof hasn’t successfully dodged the consequences of his petty crimes for nothing. He quickly cheats the system to acquire the poisonous medication AZT and, after an eye-opening trip to Mexico, he figures out how to profit from the sale of unapproved drugs to the throngs of support group members back home.
Along the way he allows himself a guarded friendship with a drug addicted transgendered salesperson, Rayon (Jared Leto in an effective and quietly humble performance), and eventually accepts to some degree the gratitude and generosity of the many gay people around him.
Nearly everyone in the story, patients and physicians alike, is a wretched outcast, damaged by drug addiction or homophobia or loneliness or their own destructive behaviors. No one is healed, no one fully conquers their demons, and no one gets out unscathed. The fact that the filmmakers make you root for every one of them is a testament to terrific storytelling and a vexing main character you grow to love and admire.
These characters also live a world away from the more sophisticated New York City activists that populate the Oscar-nominated documentary from last year, How to Survive a Plague. In fact, the big city AIDS battles being waged elsewhere barely register in this story about southern vice and ingenuity. When Woodroof and his rodeo buddies first learn of the death of Rock Hudson, the actor is dismissed as a cocksucker, except for one of them who doesn’t know who Hudson is. His buddies scoff. “Haven’t you ever seen North by Northwest?” one asks.
Woodroof’s entrepreneurial efforts ultimately create the Dallas Buyers Club, a real business that provided unapproved medications to very desperate people with AIDS. As someone who once used a buyer’s club to purchase Compound Q and other pharmacological footnotes in HIV/AIDS history, I can attest that everything from the cheap cinder block setup in the film to the anxious expressions on the customers felt tragically familiar.
The real villain in the story, other than the virus itself, would have to be the early, toxic drug AZT and its manufacturer. Although the film uses a fictional pharmaceutical name, let history show that AZT was produced by Burroughs Wellcome (eventually absorbed into Glaxo SmithKline), who downplayed side effects in a complicated rush by the FDA to have a drug, any drug, to treat the growing pandemic.
Matthew McConaughey is a revelation. His physical transformation alone would be Oscar bait were it not for his ability to gain our affections for such a self-serving swindler. Calling the performance free of vanity is an understatement. His harrowing depiction of living with AIDS makes the award-winning Philadelphia look about as realistic as Dark Victory. It reminds me of when we settled for scraps in Hollywood’s depiction of AIDS, when any major actor brave enough to play a gay man won an Oscar.
There is a moment late in the story during which Woodroof checks himself in the mirror before an evening out. Suddenly he finds himself staring, and in the dim bathroom light he sees the undamaged face of the man he might have been. He allows the slightest expression of pride, for the things he has accomplished, for those he has helped. And then, as those of us who lived through the 1980′s know so well, the face returns to a look of both hope and despair, of the beautiful sadness that always brought too many questions about the fate that was barreling towards us.
It is that face in Dallas Buyers Club, the one free of blood and injury, that is the most haunting of all.
(Photo credit: Anne Marie Fox / Focus Features)
For those who survived the deadliest AIDS years of the 1980′s, there is a growing movement to address the kind of post-traumatic stress and “crisis of meaning” that has plagued many of us. Some of this comes as a response to the death of activist Spencer Cox last year, although it is a long overdue issue to be addressed. You might appreciate coverage of the New York City forum held earlier this year, “Is This My Beautiful Life?” (a video recap is here)or the more recent forum in San Francisco, “Kick ASS (AIDS Survivor Syndrome)” (with a video chronicle of the event here). My hope is for more forums like these in other cities, and an ongoing, programmatic response from service organizations to respond to these issues.
Monday, September 16th, 2013
At the recent 2013 United States Conference on AIDS (USCA) in New Orleans, the word “stigma” wafted through the event, in workshops and throughout the exhibit hall, like an annoying new pop song you couldn’t stop humming.
The Stigma Project. The Mr. Friendly campaign. The CDC “Let’s Stop HIV Together” media campaign. My own POZ Magazine stigma cover story issue (“The Sound of Stigma”), an indictment of gay community and the antipathy between positive and negative, sat in stacks at the POZ booth. Panel discussions and workshops were held on identifying stigma, combating it, living with it. If Lady GaGa would only record an anthem about it, she could finally knock Katy Perry off the charts.
But there’s good reason for it. As Peter Staley (How to Survive a Plague) said in a session of people living with HIV, “One of the biggest generational shifts that I find most depressing is that most of the stigma we deal with now comes from within communities.”
In my video blog recap, you’ll meet as lot of people addressing this issue in various ways. You’re also going to meet advocates of both the celebrity variety (Mondo Guerra of Project Runway (photo at top), and photographer Duane Cramer) and those doing the work on the ground in communities large and small. As usual, it was the people and their personal commitment that caught my attention, and this recap is a salute to their efforts.
The generational differences Peter Staley spoke of is also a curious new bend in the culture of HIV. Once upon a time, our communal experience of AIDS, at least as gay men, was much the same. Our lives were bound in the sameness of death, despair, and then, hope. But since then our generations have separated, with younger gay men less traumatized or fearful about the virus, and (too Xanax many) older gay men judging them for behaviors and mistakes we ourselves made in our youth. This too is a subject ripe for conversation, with writers like the irritatingly young Tyler Curry broaching the topic, and public forums springing up to address the matter of post-traumatic stress among “the AIDS generation,” which I suppose means me.
To some, conferences like USCA represent “AIDS, Inc.,” or a waste of resources that feels self-congratulatory and a poor excuse for plane flights and rubber chicken plenary lunches. I disagree. If the pharmaceutical industry, highly visible and paying much of the tab at events like these, wants to underwrite sessions while promoting their key messages and products, they can be my guest. Conference attendess are sharp enough to take what they need and leave the rest, and the pure energy and support between those doing the work is worth the cost in my mind.
As Paul Kawata, of the National Minority AIDS Council, the producers of the event, said to me, “If we can inspire people to devote one more to year fighting this epidemic, I feel like we’ve won.”
Thanks for watching, and please be well.
I have the privilege of presenting “Mark’s Poz Time Machine” at a retreat for poz men in Montana this weekend, hosted by the Montana Gay Men’s Task Force. I really enjoy this presentation, which is an interactive walk through the history of of HIV/AIDS, from 1981 to the present, using video clips and photos, my own story, and drawing upon the life experiences of participants along the way. From my pre-AIDS win on The Price is Right to the tears of the mid 1980′s and then a re-established HIV culture, it allows everyone to contribute some powerful storytelling and a shared history. If you would like more information, contact me. I come cheap.
Tuesday, September 3rd, 2013
Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know.
Nearly four years ago, I invited four friends living with HIV over to my place for a night of devouring brownies and sharing secrets, while my friend Charles captured it on video. The result was “You Gotta Have Friends,” the first episode of what would be renamed “The Real Poz Guys of Atlanta.” The second episode was posted more than a year later (you can see a recap and both previous episodes here). And now, episode three.
These guys must be getting the hang of this, because we discussed and revealed things like never before. From crystal meth addiction to our mothers, nothing was off limits. There’s even a (NSFW-ish) chat about tops and bottoms and modern gay sexual politics. And dealing with loss. And reaching out for help when you really need it.
I’m not going to lie, I’m proud of this video. It’s clear that my editing skills have improved since our first episode along with the group’s ability to keep it real. More importantly, the video series represents a lot of issues I feel passionately about – combating HIV stigma with honesty about our status, the crucial importance of social support, and living joyfully. That, and I love hearing my friends talk dirty for a good reason.
I really hope you share this one with your friends and networks (select one of the share features below). I think it represents what this site does best. And judging from the emails I receive, there’s a real need for people with HIV, particularly the newly diagnosed, to know that life, and friendship, doesn’t end with a positive test result.
I look forward to your comments! Thanks for watching, and please be well.
(The Poz Guys pictured above are (left to right) James, myself, Antron, Eric, and Craig. I’m the only one who isn’t single; I know they would appreciate me mentioning that.)
Our friend Jeff Berry from Positively Aware has announced the fourth annual “A Day with HIV” photo campaign, and this project is so cool – and so damn easy to participate in – that I tramadol dosage for dogs want to challenge you to just do it. It works like this: they collect photographs and captions from hundreds of people from a single day, Saturday, September 21, to help the world better understand the trials and triumphs of living with HIV. Some are artsy, some are simple photos (like the 2012 submission from Jason Zupke at right). Select photos will appear in the November/December issue of Positively Aware, and all of the photos submitted will appear on the campaign’s website. Give it a click to find out more.
If you are anywhere near Atlanta this October 13, would you like to join me in my role as a Grand Marshal for the Atlanta Pride Parade? When I learned of this honor recently, I knew I needed to share it with friends like you or else my ego might blow my head open halfway down the parade route. I’m asking people living with HIV and our allies to walk beside my car (I’m hoping for a red convertible!). I would love a message of solidarity and support for people with HV, and anti-stigma messages like “I love my Poz boyfriend!” and “HIV Educated – UB2.” The first 20 people to show up will get a free HIV POSITIVE t-shirt provided by AIDS Foundation Chicago. I’m excited to already have the support of The Stigma Project and the CDC’s Let’s Stop HIV Together campaign. To get the latest details, go to Facebook and join the My Fabulous Disease page. See you then!
The United States Conference on AIDS (USCA) is in New Orleans this weekend. I love this conference, because it provides skills building for people working on the front lines in community based organizations and public health — exactly where I spent a lot of the early years of HIV/AIDS. Anyway, I’ll be video blogging from the event and providing you the sights, sounds and people who are making a difference. If you happen to be there, please join me for a panel presentation this Sunday morning at 10:30am, when those of us participating in the CDC’s “Let’s Stop HIV Together” campaign discuss living with HIV and our commitment to HIV prevention.
Tags: Aging, barebacking, culture, family, gay, help others, hiv, meth, physician, recovery, Recreation, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 3 Comments »