Posts Tagged ‘research’
Sunday, March 24th, 2013
I have some amazing friends for you to meet.
Beginning two years ago, TheBody.com asked me to produce a series of videos (“A Day in the Life: Keeping Up With Your HIV Meds”) that would profile a person living with HIV, what their day looks like, and how their medication regimen fits into their daily routine. It was a great opportunity to highlight the everyday lives of people living with HIV, but also to let their spirit and passions come through, and show we are whole people — not simply the virus.
The profile subjects came from all walks of life, in various cities around the United States, and their personalities and interests — their families, their hobbies, and even how they became HIV positive — were all I needed for inspiration.
Below are the eleven videos that have been produced to date for the series (an ongoing feature on TheBody.com and they also have an entire resource center about keeping up with your meds). You can watch the videos here, or follow the link in the title to view the post as it appeared on TheBody. They are each less than ten minutes long; just scroll through them below and find a story that sounds like yours — or better yet, hear what the journey of someone completely different from you is like! Are you ready?
Damaries is from South Florida and could not have been more lovely; we laughed a lot during our day together. Her strength is what impressed me most: she did not come to the decision to start HIV medications lightly. She really did her research before she began a regimen. Filming her story was also a great excuse to hit the beach, since she loves to find her peace and tranquility on that gorgeous sand.
Well, first of all, Tree is adorable. So there’s that. He also has an equally adorable dog, who tried mightily to extend his few minutes of fame by sneaking into the camera shots and barking woefully from the other room. For his part, Tree does a great job explaining how he kept his medication regimen despite multiple moves and even being homeless for a brief period. I really like the Brooklyn montage of Tree’s neighborhood at the beginning of the video.
What an elegant woman Eva is. She was so gracious during our day together and had an almost regal sense of self. She really impressed me. Not only did she make peace with the man who infected her many years ago, she became an advocate for all women living with HIV and devoted quite a lot of time to volunteer work. She’s also an avid traveler — I’ve never seen so many magnets from exotic places on one fridge in my life.
What a hoot! Robert (Bobby) Darrow and I were childhood friends, when we both performed in community theater together in Shreveport, Louisiana (we were both newsboys in Gypsy, for all you musical theater queens). As we grew, he always got the good parts and I ended up working the spotlight — shining it on him — but I’m not bitter, I swear! Producing this video was a great chance to honor my lifelong friend for the activism he has done since the beginning of the AIDS epidemic. And it also allowed me to honor theater itself, and how Bobby is now back in the very place he and I so loved when we were kids. This one is special to me.
You’re going to be blown away by the strength of this woman’s convictions — and the strength of her marriage. Brooke learned she was HIV positive during her pregnancy, and not only was her husband completely supportive, he stood by proudly as Brooke became a visible advocate for woman’s health, the importance of HIV testing, and their personal struggle to afford HIV medications so that their baby would have a better chance of being born without HIV. And speaking of babies, guess who steals the show in this video?
Khafre was one of the most immediately spiritual people I met during this series. He has a very strong sense of faith and a commitment to his own spiritual principles. He was also in the midst of organizing a fund raising bike ride across the country to benefit HIV/AIDS services for people of color, and I admired his dedication and pure energy. The time he devoted each day to prayer and meditation was really lovely to observe and capture in the video.
Petra & Efrain could give the other couples in the series a real run for their money for the title of Most Romantic. You can’t help but grin, watching Efrain describe seeing his future wife for the first time at an AIDS conference, where both were community advocates and both were living with HIV. They not only lift up one another during the frustrations of HIV life, they know how to take time to love and enjoy one another, as their salsa demonstration clearly shows.
Tales of triumph over adversity don’t come more dramatic than the story of Fortunata. Not only is she the single, proud parent of a gorgeous daughter (the apple doesn’t fall far from the beauty tree), she had a devastating accident when she was hit by a car walking across the street — and then had to manage her HIV meds along with a host of others while she recuperated. The fact that she relates all this with such grace was amazing to me. I had so much footage of her simply looking ethereal and lovely, the video could have been twice as long.
Anyone who follows my blog — or HIV/AIDS advocacy — knows what a gift Nelson is to our community. He’s been our own Jack LaLanne of HIV, teaching the importance of health, exercise and nutrition since the beginning of the epidemic — the video blogs he did with me on nutrition (where he cleans out my fridge) and exercise (where we hit the gym together) are hilarious and very informative. And, of course, he has a hot body. It might come as some surprise, then, that he’s very modest when it comes to showing it. I had all sorts of shots and angles I wanted to do that would have shown of his physique, and he politely demurred. He also was always focused in our interview on what would apply to regular folks living with HIV, rather than the more privileged among us. In other words, the man is a class act, with a humility that speaks volumes about his integrity and commitment.
I’ve been watching Robert grow as an HIV/AIDS advocate for several years now, since he began POZIAM social network and radio show while still in his twenties. I had fun doing the fast cuts that open his video because I thought it captured the sense of motion and vitality he has. When I become disheartened, wondering where are the next generation of activists on the scene, I remind myself there are people like Robert.
I’ve always been open on my blog about being in recovery from drug addiction, and George — who survived 27 years of street drugs — and I had an immediate connection. He devotes his life today to service for others, whether it is at an AIDS agency or through various addiction activities. In fact, something he said about his recovery during our interview really made sense to me, and I stopped the camera and shared some of my own story. For nearly thirty minutes he let me pour out some of my own fears and challenges, and listened with the attention of a man who has been there. I think his spirit is well-represented in this video.
To watch George’s video, just follow this link to TheBody. This video is so hot-off-the-presses that I’m not able to share it here yet. Follow the link and hear his story.
I learned a lot of each of these people, and I know they represent a tiny fraction of the courage and daily fortitude displayed by people living with HIV every single day. I really want to thank this group for taking me into their homes and lives and allowing me to share their stories with you.
Thanks for watching, and please be well.
Tags: aids, gay, help others, hiv, lipo, physician, recovery, research, Sexuality, testing
Posted in All Other Video Postings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »
Wednesday, February 27th, 2013
The turning point could be traced to August of 1998. It was the month that, for the first time in well over a decade, the Bay Area Reporter did not have a single AIDS obituary submitted for publication. The promise of protease inhibitor medications had been realized, and it felt for many that our long community nightmare was coming to a close.
The milestone in the life of San Francisco’s LGBT newspaper was celebrated around the country and became a media story unto itself. “AIDS Deaths Take Holiday,” trumpeted the Pittsburgh Post-Gazette. “For Once, No AIDS,” said the Wilmington Morning Star. The headline in the Spokesman Review assured us that “No News is Good News.” The Bay Area Reporter’s own front page carried two words in enormous type: “No Obits.”
That could be seen as the moment in which coverage of HIV in gay media began to fade.
Today, the LGBT community is celebrating other milestones with joyful regularity. The right to serve openly in the military. Marriage. Growing acceptance and political muscle.
HIV/AIDS has largely moved off the front page and out of public consciousness. Despite newsworthy data such as increased HIV transmission among gay men and the ongoing slaughter of gay black men in particular, those stories feel stale. It has all been said so many times before. Even new storylines, such as Pre- and Post-Exposure Prophylaxis, cure research advocacy, and tools on the horizon such as rectal microbicides, it’s become harder to capture the imagination or interest of the gay community. When new data was reported recently showing that half of the 20-year-old gay men today will have HIV by the time they’re 50 (and if they’re black, that figure rises to a whopping 70 percent), the news barely rated a tweet or newspaper item.
What, then, is the responsibility of LGBT media in this climate of rising infection rates and a bored readership? Are they simply reflecting the community’s waning interest, or do they have a responsibility to keep HIV in the headlines, to serve as advocates for better public awareness?
I was just in the perfect place to ask these questions: The 2013 LGBT Media Journalists Convening, held in Philadelphia and sponsored by the National Lesbian and Gay Journalists Association. About 100 media professionals, including a healthy dose of bloggers like myself, attended the event, which educates LGBT journalists on various issues so they we might report on them with more authority. Those issues this year were transgenders, immigration, aging, labor, and international rights.
The absence of HIV/AIDS wasn’t lost on me, I assure you (AIDS activists called them out about this in real time in the event’s Twitter feed at #LGBTmedia13) and it became the topic of my interviews with various people in attendance. Their very personal answers – and undeniable passion for the cause of HIV in many cases – sure made it a little easier to understand the tough choices they are making every day. I will be very interested in your reaction.
Aside from my griping over HIV coverage, it really was terrific to be in the company of a lot of dedicated journalists, and I appreciate very much the work done to mount the event, including the contributions of Bil Browning of The Bilerico Project (pictured with me above, at right).
Is sparse HIV coverage just a sign of the times? Is it progress? And what can we do to increase visibility again?
The journalists in my video provide some answers, but I especially liked the observation by gay political activist David Mixner, who reminded me that coming out, whether as gay men or as someone living with HIV, is the greatest tool in fighting stigma and helping people see the importance of the issue. I’m glad I have some company in the poz blogosphere, but we can always use more voices. Anyone who has the ability to share their story, online or across the dinner table, can make an awesome contribution.
Meanwhile, I’m going to keep nudging my LGBT media colleagues, and I encourage you to do the same.
Thanks for watching, and please be well.
Tags: aids, barebacking, criminalization, culture, gay, hiv, politics, research, serosorting, Sexuality, testing
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 7 Comments »
Wednesday, January 9th, 2013
My fear of all things anal began when I was an early teen. My older brother David took great delight in bursting into our bathroom to startle me, especially if I was on the john. And, since I was a pubescent redhead, his sudden visits included a lot of laughing and pointing.
I was mortified beyond belief. To this day, I must be sure no one is in the house, and then close and lock the bedroom and bathroom doors before I can properly relax. And I live alone.
But you can’t avoid everything anal if you’re growing up gay. Not if you want to do the really fun stuff.
I discovered soon enough that if someone had serious intentions in regard to my backside, I couldn’t simply rely upon a bran muffin and a Hail Mary to be properly prepared. God forbid I would, you know, not be… well, you know. This ongoing fear had a habit of wrecking the mood and the evening.
My exclamations during sex were usually panicked calls to turn the lights up, so I could carefully inspect the situation. Or a plea to stop altogether. “Okay, that’s fine, no wait!” I would cry out. “Am I okay down there? I mean, is it… okay go ahead… no hold on! Are you sure I’m…?” I was usually so involved with my protestations that I would hardly notice my date gathering his things to leave.
There are cleansing products meant to address this situation, but they require a certain comfort level with your own body and a little patience, meaning, they were incomprehensible to me. But I tried my best.
Drugstore enemas always felt too clinical, like something a nurse should be administering so you could “move your bowels,” a phrase I hope I never have to hear again, much less type.
But never fear. Leave it to gay men to popularize the “shower shot,” a long hose which screws into your shower head and ends in a narrow nozzle, just right for sliding up your bum for a thorough internal rinse.
The modulation of this instrument, however — and I cannot stress this enough — is of utmost importance. Too little water pressure and you’ve got a dribble with little cleansing effect. Too much, and you’ve just inserted a pressure washer into your ass that could peel the paint off a building.
I was first introduced to this contraption in my early twenties, when my first-time date invited me to visit the bathroom to “rinse out” while he relaxed in bed and waited. I stepped in the shower and surveyed the dangling metal hose. I turned on the water. I considered how it all might operate, and I made my best guess, standing there for God knows how long, hose inserted and whistling a happy tune.
I must say in my defense that no one had ever explained the device to me, much less how to gauge the input versus the output.
That poor, unfortunate man. He had really pretty designer sheets, covered with a gorgeous blue and white pinstripe blanket that I can still see clear as day. Such a lovely bedroom. That is, until a few passionate moments later, when all of it was soaked with a solid gallon of spoiled water that had been percolating in my poopchute, exploding from me in a streaming rush that looked like the wake of an outboard motor hurtling across Lake Erie. The word “apocalyptic” comes to mind.
Only as I matured did I realize I had options (and I will now introduce cute baseball analogies to illustrate my point). I discovered I did not, in fact, always have to play catcher, and I stepped onto the pitcher’s mound with great enthusiasm. But as much as I enjoyed the view from above, I worried still, that maybe I wasn’t holding up my end of the bargain. It was only after pitching a near-perfect game one day that my partner in the dugout helped me make a simple decision.
“Mark,” he said. “Why don’t you just stick to what you do well?” And it was this generous assessment that gave me the confidence to hang up the hiney hose forever.
Yes, that’s right. I’m now a dedicated top. I’ll allow you a few moments of incredulous wonderment.
What’s even more amazing is my having a boyfriend who is not only loving and adorable, but absolutely expert at the exotic mysteries of booty sex preparation. It really is an impressive talent, if you ask me. Like walking on your hands, or spinning plates on sticks.
This is all to tell you, dear reader, that sometimes you must find solutions to your fears in order to take care of yourself. And sometimes you have to face your damn fears head-on. I was reminded of this recently when, at fifty-two years old, I had my first colonoscopy. I don’t think I have to explain my anxiety level going in to this procedure.
Everything checked out fine, thanks. I had heard the anesthesia they give you can produce some odd behavior, but other than proposing to the physician and asking the recovery nurse if they located my pet hamster, I behaved myself quite admirably.
The only side effect of my colonoscopy was a bloated feeling and a case of the gurgles. Well, and a few hours later I had the longest, most continuous release of gas I have ever experienced in all my days. I’m talking a minute plus, people.
I really wish my older brother David had been here. He loves that kind of thing.
If I can face my deepest fears, so can you. Did you know that studies show people living with HIV have a higher incidence of “colonic neoplasms” (the polyps they are looking for during a colonoscopy), which should be checked out for cancerous cell growth? Anyone aged 50 should get a colonoscopy, and some protocols suggest that people with HIV start this screening at age 45. Please don’t delay. Call your doctor! (At right, a picture of my happy procedure team just prior to my colonoscopy.)
And speaking of rectal douching (and why not? We really should discuss this topic more, considering it is such a common practice among gay men), I cannot say enough about LifeLube, the blog created by the AIDS Foundation of Chicago to help gay men address sexuality and their bodies. They have an entire section devoted to rectal douching (did you know there are new douches that limit the amount of healthy bacteria removed?) and another feature, Andrew’s Anus, that provides engaging answers to the questions you’re afraid to ask. The blog is no longer active – meaning, no new postings – but there is a wealth of information here and you should definitely check it out.
Wednesday, January 2nd, 2013
“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… I miss the man I was forced to become.”
– “Once, When We Were Heroes,” 2007
AIDS did not kill Spencer Cox in the first, bloodiest battles of the 1980’s. It spared him that.
The reprieve allowed Spencer’s brilliance as co-founder of the Treatment Action Group (TAG) to forge new FDA guidelines for drug approval and help make effective HIV medications a reality, saving an untold number of lives.
Such triumph by a man still in his twenties might have signaled even greater achievements ahead. Instead, Spencer found himself adrift in the same personal crisis as many of his contemporaries, who struggled for a meaningful existence after years of combating the most frightening public health crisis of modern times.
Gay activists like Spencer were consumed by AIDS for so many gruesome years that many of them were shocked, once the war abated, to see how little around them had changed. Climbing from the trenches, they saw a gay culture that must have seemed ludicrous, packed with the same drug addictions, sexual compulsions and soulless shenanigans that AIDS, in its singular act of goodwill, had arrested for a decade or so.
They found themselves in a world in which no one wants to see battle scars, where intimacy is manufactured on keyboards and web sites, where any sense of community had long since faded from the AIDS organizations and now only makes brief appearances in 12-step meetings, or as likely, in the fraternity of active crystal meth addicts chasing deliverance in a dangerous shell game of bliss and desolation.
The dark allure of meth, a drug so devoured and fetished by gay men today that it is now a leading indicator of new HIV infections, enticed Spencer at some point along the way. The drug is known to whisper empty promises about limitless power and sexual escape, while calming the addict’s ghosts and sorrows for miserably brief periods of time.
When Spencer Cox died on December 18, 2012, in New York City, the official cause of death was AIDS-related complications, which is understandable if post-traumatic stress, despair and drug addiction are complications related to AIDS.
Spencer believed that this connection exists. His own writings for the Medius Institute for Gay Men’s Health (an organization he co-founded after his work with TAG) focus on exactly the issues that were distressing him personally: Crystal meth abuse. Loneliness. Risk taking. Feelings of confusion after years of accomplishment and purpose.
In retrospect you can read his work and break the private code written between the lines. It spells out “HELP ME.”
Spencer’s life during this period and beyond was difficult, by many accounts. The Medius Institute failed due to a lack of funding, defeating Spencer’s effort to address mental health issues among gay men. His drug addiction spiraled and ebbed and raged again, until he finally retreated to Georgia to live with family for a few years.
When Spencer returned to New York City last September, many of his closest friends had lost track of him. There is uncertainty about his last months, and no evidence that his addiction was active, but what little medication compliance he managed had been abandoned completely, setting the stage for his final hospitalization.
Spencer Cox died without the benefit of the very drugs he had helped make available to the world. He perished from pneumonia, in an ironic clinical time warp that transported him back to 1985. It was as if, having survived the deadliest years of AIDS, having come so close to complete escape, Spencer was snatched up by the Fates in a vengeful piece of unfinished business.
AIDS has always been creative in its cruelty. And it has learned to reach through the decades with the second-hand tools of disillusionment and depression and heart-numbing traumas. Or, perhaps, using the simple weapon of crystal meth, with all of its seductions and deceits.
Yes. There are many complications related to AIDS.
To consider “survivor’s guilt” the culprit behind the death of Spencer Cox is a popular explanation but not necessarily an accurate one. That condition suggests surviving when other, presumably worthier people, did not. Sometimes guilt has nothing to do with it.
For many of our AIDS war veterans, the real challenge today is living with the horror of having survived at all.
(PHOTO CREDIT: Walter Kurtz)
Tags: aids, culture, hiv, meth, physician, politics, recovery, research, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 50 Comments »
Tuesday, July 31st, 2012
AIDS2012 was exactly as I had hoped: an enormous “summer camp” for advocates from around the globe, and I had a blast bringing their stories to you. Let others cover the medical updates and the big name speakers. I wanted to give you a sense of the people who are doing the work on the front lines – with a few bigwig interviews along the way.
Every day I sought out stories I thought would interest you and took a ton of footage (with the help of my talented camera person and schlepper Tina Robles). After a bite of free food from whatever reception was happening, I tried to make it to at least one evening event. And then back to my hotel, where I reviewed the footage, did my best to conceive a theme for the day, and then started editing. I’m quick at the editing part, but it still took 4-5 hours, into the wee hours of the morning. Then I’d sleep for a couple hours and start again. I’ll need the two years between now and AIDS2014 just to catch up!
Here are links and a review of each of the six video blogs I produced during the week. Simply click the title to see the posting and watch the video.
Since less than 5% of the programming for AIDS 2012 is targeting to MSMs (Men who have Sex with Men), a special one-day pre-conference is held the day AIDS 2012 convenes to address the needs and issues of this population.
My report includes a chat with United States Rep. Barbara Lee (right), who has just introduced comprehensive HIV prevention and anti-stigma legislation; the advocates fighting laws that criminalize people with HIV (like Sean Strub and Edwin Bernard), a little social research on Grindr (the gay man’s cruise phone app), a chat with Positive Frontiers editor Alex Garner about getting rejected (and rejected others) during the dating process, and a visit to an AIDS2012 Reunion poz social event.
In this brief video episode from the first official day of AIDS2012 the party is rolling, with an outdoor concert (steps away from the AIDS quilt) featuring Weyclef Sean and Cornel West (!), dancing dignitaries, and a somewhat surprise ending!
The fact is, Day One was a light day, the calm before the storm, as people poured into DC and braced themselves for the busy week ahead. And it was my last chance to get a decent night’s sleep.
I spent some time in the exhibit hall critiquing the fashions (and the issues) of various attendees with fashion maven Jack Mackenroth (poz and proud veteran of “Project Runway”), started a YouTube rivalry with inspirational singer Jamar Rogers (“The Voice,” right), and learned about HIV and aging from an expert with the Terrence Higgins Trust. I also had the chance to speak with the head of the CDC’s HIV/AIDS Division about their new “Let’s Stop HIV Together” campaign, in which Jamar and myself both participate.
And, with all the talk at the conference about the devastating effects of HIV stigma, I found validation of my own HIV status in the unlikeliest of places: the Gallery Place subway station.
Several contingents marched and protested separately throughout the city – marching for housing, and civil rights, and in protest of the pharmaceutical industry’s “intellectual property” policies – and then convened in front of the White House. Whereas the march and rally at AIDS2010 in Vienna was a peaceful affair, our proximity to the White House, the aggressive crowd and the police on horseback all lent an air of old time activism circa 1987.
The people included in the video can speak for themselves, and quite eloquently. Maybe it was the emotions of the event — anger, nervousness, pride — but it was an exhausting day. I felt the residue of grief for lost friends in a way I haven’t experienced in years.
This is my favorite, no doubt, and I’m proud of the visual and audio techniques I employed to give some historical context to the event.
It was time for a tour of the heart and soul of AIDS2012: The Global Village. This massive hall is the only part of the conference open to the public, and it has a grass-roots feel, crafted from the love and devotion of hundreds of community groups who are doing “the work on the ground” in cities and small towns throughout the world.
Thank God I’m a video blogger, because words escape me when trying to describe the colors and displays and most importantly, the committed people behind it all. You’re about to meet drag queens who make their living handing out condoms, sex workers demanding an end to criminalization, young prevention workers from far-flung corners of the planet, a stunning photo exhibit from the Ukraine… the list goes on.
Our little summer camp for global AIDS advocates (and physicians, and commercial interests) had come to a close, and there are images that will be knocking around in my head for weeks to come (and some, forever).
I begin this video with the astonishingly talented performance poet Mary Bowman, a young woman with HIV showing us her heart and soul on stage. It’s a jumping off point for this final, brief video, in which I pay tribute to the people on the front lines who are the very essence of this conference. They are the ones with the “star power.”
This opportunity to share my experiences at AIDS2012 was a distinct honor and privilege, my friends. My deepest thanks to you all for the many cross-postings and shares and tweets. This was a week I will never forget.
Enjoy the videos, and please be well.
Tags: Aging, aids, barebacking, criminalization, culture, drag, gay, gratitude, help others, hiv, physician, politics, recovery, Recreation, research, Sexuality, testing
Posted in All Other Video Postings, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 5 Comments »
Saturday, July 28th, 2012
Our little summer camp for global AIDS advocates (and physicians, and commercial interests) has come to a close, and there are images that will be knocking around in my head for weeks to come (and some, forever).
The seven foot Mexican drag queen handing out condoms springs to mind, of course. The astonishingly talented performance poet Mary Bowman (right), showing us her heart and soul on stage. And escape artist Daniel Bauer‘s highly personal show mixing magic with confessions from his life as a gay man living with HIV. Seeing presentations by mentors I admire, such as Sean Strub and Edwin Bernard. The Australian chief justice with a gay partner of 43 years, giving me suggestions on maintaining a long marriage (“Give in,” he advised).
In this farewell video posting, I pay tribute to the people on the front lines who are the very essence of this conference. They are the ones with the “star power,” and they fill me with renewed commitment and energy that might possibly last until AIDS2014 in Melbourne, Australia.
Thanks for watching, my friends. It has been my privilege to be your tour guide and I deeply appreciate your many notes and cross-posts and “likes” on Facebook. I like you very much, too.
Please be well,
Tags: aids, criminalization, culture, drag, hiv, physician, politics, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Thursday, February 23rd, 2012
The image in my mind has never left me, even after many years of trying, of applying layers of wallpaper to that corner of my mind. I am in someone’s bedroom — it could have been anyone, really — and I am offered a syringe to inject crystal meth. The syringe has been used. I take it. I consider the consequences for a brief moment, but I am cavalier. And very, very high. I use the syringe.
It wasn’t the threat of HIV that gave me pause. It was hepatitis C, which I knew was serious… and that’s about it. But I can tell you this, now, my friends: More U.S. residents are now dying of hepatitis C complications than HIV-related illnesses, as reported recently by Tim Horn in Hepatitis News.
Within days of using that syringe, maybe two weeks, I become horrifically ill. The acute infection swept through me like a freight train, exhausting me, turning my urine brown, making it impossible to perform routine tasks. Doctors diagnosed it quickly, and then gave me the grave treatment plan: 11 months of interferon, coupled with ribavirin. The interferon, a ferocious chemotherapy, would cause mood swings, deep depression, and would be administered, ironically, by injecting myself with it each week.
Depression is so severe among interferon patients that they do not allow pilots to fly who are being treated with it, for fear they will deliberately crash the plane.
The months I endured with hepatitis C and the treatment protocol remains the worst period of health in my life. The mental side effects were as devastating as the illness. Everything hurt. Everything made me angry. Or want to cry. Or convinced me you were against me. Those eleven months crawled by without mercy.
The good news, thank God, is that the treatment plan worked, and I cleared hepatitis C from my body. There has been no recurrence.
I’ve said that the disease most likely to kill me is addiction, not HIV, and hepatitis C was a terrible by-product of my addiction.
While I am drug-free today and maintaining good health, the report that hepatitis C has overtaken HIV as a cause of death brought up some strong emotions. It reminded me of the insanity of the interferon treatment, and then, of course, the insanity of my drug addiction. And it made me wonder how many of those who are dying of hepatitis C acquired it the same way I did.
My life is filled with unlikely rescues. To have lived with HIV for thirty years and to be here typing on my laptop is amazing. To have thumbed my nose at that fact, and reward my good fortune by sticking needles in my arm, well, that is as alarming and sad to me as it must be to you. It’s tough to feel worthy of the grace that has saved me, again and again. So I’ll simply be grateful to be clean and alive today.
Get tested for hepatitis and get the vaccine for A and B if you have not already been exposed. And should you be an injection drug user, bring your own clean needles where ever you use. You and I both know that, when the choice is a used needle or getting high, all of our good fortune can disappear in a flash.
p.s. May I sneak back on my HIV criminalization soap box for a moment? (My face-off between a poz man and the sex partner accusing him of not revealing his status has garnered some interesting comments, and the attention of advocates worldwide.) If 26 U.S. States have laws criminalizing the potential exposure of HIV to another person, than why don’t they have laws against exposing someone to hepatitis C, which is now officially more deadly than HIV? Thank you. That will be all.
On a ridiculously different note, may I say with some pleasure that I always win the Oscar pool. If you are headed to an Oscar party this weekend, by all means, listen up! Here are my predictions. I am including the “little” categories because that is how you rack up points! If you must vary from my experienced guesses, be forewarned: you never win the Oscar pool by going with your passions. This is a game of politics and timing.
BEST PICTURE: The Artist. The Descendants had great momentum earlier this year until this adorable gem appeared. The statue has already been engraved.
BEST DIRECTOR: Michel Hazanavicius (The Artist). Your first lesson: when in doubt, choose whatever nominee is attached to the clear Best Picture winner.
BEST ACTOR: George Clooney (The Descendants). George has a supporting statuette already, but the Academy loves the man, and so do I. He will edge out the leading actor from The Artist, who’s name I don’t feel like looking up and spelling out.
BEST ACTRESS: Viola Davis (The Help). Even Meryl wants her to win, for God’s sake.
BEST SUPPORTING ACTOR: Christopher Plummer (The Beginners). Mr. Plummer, in a cozy role in a slight film, benefits from the George Burns rule: give it to the old guy with a long history. And he made a nice acceptance speech at the Golden Globes, which Academy voters see as auditions.
BEST SUPPORTING ACTRESS: Octavia Spencer (The Help). This early favorite of a film will sweep the actress categories. Good for them.
BEST SCREENPLAY: Woody Allen (Midnight in Paris). The more he demurs, the more they love him.
BEST ADAPTED SCREENPLAY: Alexander Payne (The Descendants). A terrific film and a deserving win.
BEST SOUND EDITING: War Horse
BEST SOUND MIXING: Hugo
BEST MAKEUP: The Iron Lady (closely followed by Albert Nobbs).
BEST DOCUMENTARY SHORT: Saving Face
BEST DOCUMENTARY FEATURE: Pina
BEST ANIMATED SHORT: La Luna (Pixar gets its first short-form Oscar in over a decade).
BEST LIVE ACTION SHORT: The Shore. I actually saw these nominees, and would strongly favor Raju from India, but The Shore has bigger names (and influence) attached.
ANIMATED FEATURE: Rango. Surely the most bizarre film to win an Oscar this year. Johnny Depp is smiling.
ART DIRECTION: Hugo
CINEMATOGRAPHY: The Tree of Life. Terrence Malick, the mysterious and cultish director, started as a camera man and his shots still make the Academy swoon.
COSTUMES: Hugo (which will rack up some of these techy categories since it won’t win anything big).
EDITING: The Artist
FOREIGN FILM: A Separation. A brooding, surprising domestic thriller.
SCORE: The Artist
SONG: The Muppets
SPECIAL EFFECTS: Rise of the Planet of the Apes
Enjoy the show! Good luck, Billy!
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment ” and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?” that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions ” cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more ” and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values ” sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,” such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,” there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televisedâ€¦ on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,” the sperm bank’s director said. “I do not think you chose a redhead, unless the partner â€” for example, the sterile male â€” has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.” It ain’t easy being orange.
Tuesday, July 19th, 2011
The 2011 ADAP Advocacy Association (aaa+) conference held July 5-7 in Washington, DC, was bursting with spirit. Dozens of advocates from across the country met for three days of workshops and speakers, and in this video blog, you’ll see the entire conference boiled down to only nine minutes. I’m the cliff notes of HIV/AIDS events!
From people like Robert Breining of POZIAM from Philly to Lepena Powell Reed from Tampa, there was no shortage of passionate voices. But there were more than a few things on the conference agenda that really surprised and educated me — and provided resources I never knew existed.
Take the Patient Advocate Foundation, for instance, my great discovery of the conference. Did you know there is a non-profit foundation that focuses on resolving disputes between you and your insurance company or medical provider? Whether they are refusing to pay for a medication, or questioning a procedure, this Foundation will fight for you. They have garnered such a reputation that many companies just fold when they see the Foundation coming.
There may be politics involved here about which I am unaware, but where were our large national organizations? Frankly, I was disappointed to see a conference devoted to arguably the most pressing HIV issue of the day, held right in the DC home of most national agencies, and yet major organizations like the National Minority AIDS Council (NMAC) were not represented. As one speaker shouted from the podium, “WHERE YOU AT?”
(To NMAC’s credit, they recently launched their own web site devoted to the ADAP crisis, with much of the same information available through aaa+. The more the merrier, of course, but I sure wish large organizations would pool their efforts and support one another.)
As usual at these type events, the real value is in the company of like-minded folks trying to do the right thing, and some of our greatest champions were there, like Butch McKay of the Positive Living Conference (one of the last conferences serving those living with HIV, and the best of them all), Dab Garner of Dab the AIDS Bear Project, and Bill Arnold of the Community Access National Network (CANN).
We shared meals and gossiped about news in the HIV/AIDS arena, and ventured out in DC for a dinner here and there. Some of us ventured even later, and further, but young activists these days, whatcha gonna do? I wish I had the stamina of advocates like blogger Christopher Myron, or World AIDS Institute founder David Purdy!
But back to some great resources for you. Have you heard of the Pre-Existing Insurance Plan (PCIP)? It provides health insurance to those who have been uninsured for six months or have been denied coverage. It’s a governmental program designed to help get people insured while we’re waiting for the new health plan to kick in, which happens in 2014. If it sounds like you qualify, I urge you to contact them at 866-717-5826. The premiums are based on what a healthy person would pay in the same market.
Attending conferences like this one is a privilege and a responsibility. The AIDS Drug Assistance Program waiting list continues to grow on a daily basis, denying patients the very medications that can keep them alive. This national disgrace deserves our attention and our phone calls to our elected officials, urging them not to forget the most vulnerable among us, even in times of fiscal crisis. Today is a great day to pick up the phone and contact your U.S. representatives, and tell them that you want them to support (or keep supporting) funding for ADAP.
In the meantime, my friends, please be well.
It appears that poz queens like me have got nothing on Michelle Anderson. The Texas beauty was recently crowned the 2011 Ms. Plus America (which celebrates “the essence of the full-figured woman”), and Michelle’s platform is the impact of HIV among women, especially women of color. But there’s more. Michelle is also the first openly HIV positive woman to win a national beauty pageant title! She knew all along that entering the pageant could mean becoming a high-profile HIV positive role model. “I entered the pageant to create a voice for women, while raising awareness, educating and empowering women,” Michelle says. “I wanted to show that in spite of my diagnosis, I can still live a happy and prosperous life!” (Photo credit: Brett Vander Photography)
Artist Emilio Aponte is influenced, as he says, “by everything I see, feel and experience…” Considering Emilio is an HIV risk reduction coordinator at the Pride Center in Ft Lauderdale, it’s no wonder that his current exhibit there, “Ribbon HIV,” focuses on HIV prevention and education (at right, a detail shot from his piece, “Mutants”). And what a stunning collection it is — high contrast black and white “manipulated photos” that all have a touch of red somewhere, reminding us the virus is still present in everyone’s lives. Beyond the images themselves, Emilio accompanies them with brief, positive statements about protecting oneself from HIV risk, or taking care of yourself if you are living with HIV. It’s a beautiful collection with a terrific message. The exhibition is open to the public at the Pride Center, Main hall from July 5 to August 7, 2011 from 11:00 am to 9:00 pm.
Two exciting new clinical trials have shown the efficacy of “pre-exposure prophylaxis” therapy (taking a drug to reduce your risk of infection before engaging in risky activity). This seemingly bolsters the strategy of using meds for HIV negative people who are at risk of becoming infected, as well as the “treatment as prevention” strategy of having those with HIV on drug treatment. Not so fast, says Poz.com editor Regan Hofmann in her latest blog posting, “Not Drinking the PrEP Kool-AIDS.” Regan isn’t sure the study data is strong enough, and the daunting task of delivering meds to every negative person who might need it is a tall order. She doesn’t mince her words: “PrEP is a profit-driven sex toy for rich Westerners, disguised as a harm-reduction and prevention tool for disenfranchised people at risk for HIV.”
Tuesday, July 12th, 2011
I’m having an identity crisis. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a “resource” for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients to “care.”
And that care, no matter how they frame it or how sunny the smiles of their community liaisons, ideally would lead patients to their HIV drug product line.
In this video episode of My Fabulous Disease, I take you along to a community advisory board meeting (CAB) for HIV drug manufacturer Janssen Therapeutics, formerly known as Tibotec. There was something about the cordial way in which the invited HIV advocates provided helpful feedback to the pharmaceutical executives that felt… a little strange.
Although I have agreed to keep the particulars of the meeting private, I will say that there were no fireworks on display ” or any real antagonism to speak of. We advocates (“activists” seems like too strong a word) offered our best advice to Janssen, they appreciated it very much, lunch was served, and everyone left happy.
And I felt as if I had failed somehow. I had allowed the topics to be entirely in the hands of our hosts, and any issues that deserved discussion but were not on our elegantly typed agenda ” educating patients about treatment risks, or, God forbid, drug pricing ” were never discussed. I didn’t feel like much of an activist. I felt like a focus group member.
It’s very possible that my attitude here is outdated. In the early days, we took to the streets because societal apathy and ignorance demanded it. We protested and threw red paint and otherwise shamed the pharmaceuticals into better medications, broader access and more community involvement. Those battles were waged (and largely succeeded) many years ago, while pharma has come through with an astounding arsenal of successful HIV medications. Why does something deep inside me resist civil dialogue that advances our mutual interests? Am I living in the past, being an activist without a cause?
Clearly, we have some common goals, chief among them HIV testing and access to treatment. And pharma has resources that community organizations could only dream of, so advising them on creating the best campaigns possible (to get tested, to “get into care”) makes sense. So why was I so ambivalent?
Activism should make people uncomfortable. Just ask Larry Kramer. I watched the late, great Martin Delaney, founder of Project Inform, demand in similar meetings that more be done in terms of drug efficacy and proper data and experimental drug access. He made me very uncomfortable and I was on his side. Martin usually got what he wanted. And he wanted it for you and me.
At least, through this video, I get an opportunity to discuss some pressing concerns not covered in the community meeting. I question some basic assumptions, such as whether our hard work on the ADAP crisis is pulling attention and resources from the “big picture” of pharma drug pricing and generics, and I offer an indictment of our U.S. health care system for good measure.
There are still confrontations to have and tough arguments to make, and the agendas of advocates and pharma alike should always be questioned.
It just might be a little uncomfortable.
(“Enjoy AZT” image credit: ACT UP New York)
This blog is officially an “award winning” blog! The hard working folks at the ADAP Advocacy Association (aaa+) have honored me — and I most sincerely am quite honored — with an award for Social Media Campaign of the Year. The award was part of their first annual ADAP leadership awards dinner, held as part of the ADAP conference held in Washington, DC. aaa+ was impressed with my video blog about the ADAP summit last year, particularly with the simple instructions it gave on contacting your elected official about funding ADAP (it’s not too late to do that, you know). I am in good company: other award winners include Dab “the AIDS Bear” Garner, Butch McKay of the Positive Living Conference, and even my local pharmacy patient advocate here in Ft Lauderdale, Jason King (no relation) of AIDS Healthcare Foundation Pharmacy.
I may not be on the singles market, but I sure do appreciate the advice provided by AARP (!) in their online feature, “The Gay Man’s Guide to Dating Over 50.” Most of the piece, by gay writer Dave Singleton, is solid self-esteem building, which is great advice for any age. I’m particularly guilty of being age conscious and grieving my distant youth, so I needed to read this: “Give up trying to be perfect, too, especially if that’s a code word for ‘young.’ Yes, it’s important to take care of your body and your health, but no need to obsess. Instead of trying to be 25 again, get comfortable in your skin. Feel good about your body. That way, when someone touches you, they’ll really feel you, and not a bundle of self-critical tension. Think more about keeping a sparkle in your eyes and less on fighting the fine lines around them.” Maybe next time, Dave will offer a little safer sex advice for those over 50 who actually get lucky.
You may know that, in a 2010 CDC study of 21 major cities, 1 in 5 gay men were HIV positive. But did you know that half of them do not know they are positive? And that young black and Latino men under 25 were the least likely to know their status? Gay Men’s Health Crisis (GMHC) in New York is hoping to change that in their new “Kiss and Tell” campaign. “Kiss & Tell” encourages black and Latino young gay men to have discussions with partners about their sexual history and HIV status, and includes education, networking and skills training. “This campaign reinforces GMHC’s ongoing commitment — since our earliest days — to addressing homophobia and reducing the spread of HIV among gay men,” said Marjorie Hill, PhD, Chief Executive Officer of GMHC. “The campaign directly challenges homophobia, and acknowledges the value of relationships in the lives of young gay men while encouraging dialogue.”