Posts Tagged ‘research’
Finding Support in an e-Patient World
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 televised… 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. ;]
Mark
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PLUS…
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 — for example, the sterile male — 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.
Tags: aids, culture, help others, hiv, physician, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 13 Comments »
The Entire 2011 ADAP Conference in Nine Minutes!
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?â€
(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.
Mark
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PLUS…
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.”
Tags: aids, help others, physical, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 12 Comments »
Should AIDS Activists and Pharma Just Get Along?
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.â€
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.
Mark
(”Enjoy AZT” image credit: ACT UP New York)
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PLUS…
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.”
Tags: aids, hiv, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 20 Comments »
Hiding from the “AIDS at 30″ media storm.
Tuesday, June 14th, 2011
I shuttered myself from most of the hoopla surrounding the “AIDS at 30†milestone (we seem to have agreed on June 5, 1981, when an item in the Morbidity and Mortality Weekly Report reported deaths among gay men). The trauma of those early years is tough for me to revisit. Every media piece seemed to be about the past and it all felt emotionally overwrought and indulgent. I skimmed the coverage and secretly wished it would just go away.
Revealing the intensely personal isn’t normally a problem for me; I wasn’t shy about addressing our darkest days in my video blog entry Once, When We Were Heroes (right), so it’s not like I can’t go there. Maybe the sheer volume this month of tragic stories and heartfelt blogs and “I Was There†interviews was too much for my scarred psyche.
It could also be an ego thing. All these extra voices showing up and piling on their stories. Hey Missy, that’s my gig, move it along, thank you very much. During the media frenzy of “AIDS at 30″ I felt like a professional drag queen refusing to venture out on Halloween. Too much competition. And from such amateurs.
This week I finally paid more attention to what has been written this month, and of course, it’s pretty damn good.
The 30th (what? Celebration? Anniversary? Commemoration? Did we decide on something?) yielded some tremendous coverage at The Body, my favorite online HIV resource. And obviously, how the hell can people appreciate our AIDS history is we don’t document it at every opportunity?
Asking the gay bloggers at The Body to speak back and forth between generations about their HIV/AIDS experience was inspired. Anyone under 35 is my favorite audience, although the over-40 crowd probably understand me a lot better.
I also really enjoyed Nelson Vergel’s interview with Dr. Michael Gottlieb (left), the man who published the first report of some rather strange deaths among gay men. Dr. Gottlieb also happened to be my physician in Los Angeles when I was diagnosed with HIV in 1985. During those days, I once forced Dr. Gottlieb to tell me his best guess for my lifespan, and he went out on a limb to say I could make it to 40. That birthday came and went, ten years ago. When the preeminent expert in the field gets it that wrong, you know we’ve had more success treating this virus than anyone had hoped in the early days. Thank God.
Elsewhere, I admired Regan Hofmann’s (right) recent editorial at Poz Magazine immensely. With nary a glance backward, she sat squarely in the present and outlined the thirty issues that are most important to the crisis today and in the future. It was also a solid primer on the emergence (and debates about) new prevention theories like Post-exposure and pre-exposure prophylaxis and “test and treat.â€
Once I allowed myself to “face the past” by checking out Karen Ocamb’s amazing reports from the early days of the crisis, I was happy I did. Karen is a Frontiers news editor who has been covering LGBT issues in Los Angeles for 30 years, and in her collection of stories from the AIDS frontlines of the 1980’s (complete with video she shot herself), she takes us along to an early AIDS protest (left), to early treatment activism meetings and to the unfolding of the AIDS quilt. Karen’s close relationship with history and her “home movies” give the stories amazing intimacy. I recommend the series highly.
The media rush of tragedy and inspiration known as “AIDS at 30†is dying down. As much as I want coverage of HIV and for there to be constant prevention messages, I’m a little relieved. I can comfortably go back to debating our current treatments and campaigns, sharing sweet and funny stories about my life with HIV, and wondering why the hell the media doesn’t pay more attention to HIV/AIDS.
We all have our coping mechanisms. Allow me a little healthy denial.
As always, my friends, please be well.
Mark
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PLUS…
Sean Strub is once again ringing the bell about criminalizing people who do not disclose their HIV status, and it tolls for thee. We covered some of this ground when Sean and I discussed Five Things About HIV They’re Not Telling You, but in Sean’s newest posting at Poz.com, he takes this a bit further. Are we a few short steps away from prosecuting those who do not take their medications? Sean sees the intersection of “test and treat” and the treatment of those with HIV as criminals as a dangerous mix that could theoretically lead to forced treatment, just as a prisoner might be compelled to take meds. It’s a bit chilling, and perhaps fantastical, but whoever thought there would be people with HIV sentenced to jail for 20 years for spitting?
Our national disgrace known as the AIDS Drug Assistance Program (ADAP) Waiting Lists continues, and the lines keep getting longer for patients waiting to receive life-saving medications. There are reports of patients who have died during that wait. The ADAP Advocacy Association (aaa+) continues its mission to combat this lack of funding, and in their recent blog they offer evidence that the most effective weapon in our advocacy tool kit is you, referencing a study showing that when people like you and me simply pick up the phone, it matters as much as high-powered lobbyists. And it’s simple! Take a look at my video blog from the last ADAP Summit and you can get instructions on exactly what to do. Meanwhile, I’ll be attending the upcoming ADAP Conference in Washington, DC, and will share everything I can with you.
How do we bridge the LGBT generation gap? That’s been the topic of two really terrific postings this month around Gay Pride, and the communication disconnect between young and old seems to be the culprit. I’d love to be an “older mentor,” but who would have me? What spaces encourage dialogue and a chance to share our history? Olivia Ford of The Body.com raises these concerns in her excellent piece What’s It Really Going to Take to Make it Better? Olivia knows that we have a lot to gain from inter-generational interaction, but beyond the It Gets Better Project, how do we accomplish this? Meanwhile, some people think that younger gay men are ungrateful little snots. Jake Weinraub is totally over it, in his piece What Sucks About Most Privileged Gay Men for The Bilerico Project. Both are definitely worth your time, and you should always join the conversation by posting a comment!
Tags: aids, culture, drag, hiv, politics, research
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »
Calling HIV Negative Gay Men: This is Your Time
Tuesday, May 31st, 2011
This is directed to HIV negative gay men. Listen carefully. This is your time.
I’ve lived with HIV more than half my life, and people often praise me far more than I deserve, simply for surviving. They use words like brave and courageous.
You know what takes courage? Getting an HIV test every few months. You, waiting nervously while your most personal sexual choices are literally being tested, waiting to find out if you’ve been good – or if you’re going to pay for a single lapse in judgment by testing positive, when the look on the faces of your friends will say you should have known better.
I have no idea what that must be like. I took the test over 25 years ago. The positive result was traumatic, no doubt about it, and I soldiered on during some awfully frightening times. But I have a significant psychological advantage over my HIV negative friends: I only took that damn test once.
During all these years, I’ve acted irresponsibly at times or taken chances I hadn’t intended. But there has been no further judgment from a blood test. That reckoning was faced long ago.
But you – whether you have been sexually active for a year or a decade – have very likely faced some tough choices and behaved wisely. You keep doing the right thing.
This is your time. The word courageous is for you.
If you don’t define yourself, in large part, by the fact you are HIV negative, start now. It is your accomplishment. It says you are taking care. And it says you are eligible to participate in vaccine trials or mentor someone else trying to remain negative.
There is ongoing research now that is focused on HIV negative men like you. Exciting new studies are investigating drugs to prevent infection after something risky has occurred, while other studies have shown promise for a drug regimen that might block infection before it happens.
And right now there are vaccine trials waiting for men like you to help find the ultimate weapon against HIV. They need volunteers, badly.
This is your time. This research is about you. This call to action is for you.
I can already hear the rumblings on both sides of the viral divide. People are so quick to take offense, so afraid of being misunderstood, of being labeled or blamed or ostracized.
My fellow positive brothers are so bruised by stigma that it can be hard for them to lift you up. They’ve been rejected by you. They don’t like hearing “maybe we should just be friends†and they don’t like seeing “UB2†in your online profile. They might be positive as a result of one heated mistake, or due to sexual assault, or by trusting (or loving) the wrong person — and they deeply resent feeling judged.
Maybe they think your negative status is the result of pure luck, or that you don’t like anal intercourse, or you’re lying.
Meanwhile, your sacrifices go unrecognized. You’ve seen some positive friends take early disability, hang out at the gym and get help with the rent. They receive so much support and empathy that it must feel like there isn’t much left for you. Every year we all swarm the streets for the AIDS Walk, and you can’t help but wonder if your parade will ever arrive.
These grievances and resentments give me a headache. It doesn’t matter much to me who is most injured. How infinite is our compassion for one another? I don’t care anymore who gets what. What matters most is who does what.
This is your time. This truce, this call to a higher purpose, is for you.
You are fully human, like everyone else, my friend. You are courageous, afraid, selfish and compassionate. You make difficult choices and you make mistakes. And we need you so very badly.
Thank God for you. This is your time.
(This piece was written as part of the GA Voice commemoration of 30 years of HIV/AIDS. I was honored to contribute to their special issue. — Mark)
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If you haven’t caught up with the blog from gay theologian the Rev. Chris Glaser, his thoughtful posting about the rapture, and what it means to be left behind, is a great introduction. Chris has a way of bringing Christian teachings back to their essential meanings (in other words, without the hateful language and intent we have come to expect from fundamentalists). As a child he didn’t want to go to hell, but he was afraid of the rapture because of his fear of heights. And who in their right mind would leave this poor doggie behind?
Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous “pet projects” – including such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation. These facts, from the ADAP Advocacy Association’s (aaa+) newest blog posting, paint a dire picture of our national healthcare priorities. The blog also begs the question, “Where is the leadership?” I would urge urge you follow aaa+ and stay tuned for ways in which you can advocate to solve this national disgrace.
A New York Times article on the scientific history of AIDS does a great job of showing how naive researchers were in the beginning of the epidemic (a 1981 New England Journal of Medicine editorial didn’t even allow for the existence of a new microbe), but, more importantly, it highlights the ways in which AIDS activism and research has rewarded all of mankind with swifter drug approval and better patient advocacy:
“The relative speed with which the therapies were developed owes much to the efforts of cadres of activists who demanded that the Food and Drug Administration loosen the rules for clinical trials and speed its drug approval process. Efforts to develop anti-H.I.V. drugs have paid handsome dividends by leading to development of other drugs to treat other viral infections, like the liver diseases hepatitis B and C and certain types of herpes viruses. Also, AIDS advocacy has spurred leaders of campaigns against breast cancer and other diseases to adopt similar strategies.”
As always, my friends, please be well. And I hope you will “share” this posting with your friends and colleagues. Here’s to a wonderful summer!
Mark
Tags: aids, culture, gay, gratitude, help others, hiv, research, Sexuality, testing
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
How one Mom handles HIV/AIDS in the family.
Thursday, May 5th, 2011
God could not be everywhere, so he created mothers.
~Jewish Proverb
My mother raised six children, topping off this great achievement with yours truly. Yes, I’m the youngest, which explains a lot, but not all. To understand the rest, you’d have to know the woman. Or, perhaps, simply be a mother yourself.
Mom was there for her kids during the years my father spent in far flung corners of the world flying B-52’s as a pilot in the Air Force for more than thirty years. Mom had to be all things: nurturer, disciplinarian, confessor, judge and jury. She was the parental constant, and she performed it all admirably (and stylishly, if you ask me).
Once I was old enough to safely get home from school on my own, Mom went back to school herself. To everyone’s surprise but hers, she got a Master’s Degree — even spending a semester at Oxford — before starting a prestigious career as head of Louisiana State University’s library. She has since retired but could easily keep a smirk on her face for the rest of her life for all of those poor fools who, like me, thought her talents stretched as far as PTA meetings but not much further.
In 1985, she approached the news of my HIV status with the same pragmatic resolve as her career. She studied up, listened when I needed to talk about it, and traveled to Los Angeles to join me for a weekend educational retreat for people with HIV/AIDS and their allies. I’ll never forget her attending a breakout session on safer sex and then catching up with me to say, “Mark, explain rimming.”
Her life has been the kind of roller coaster you might expect for a woman who has raised six kids, seen a few wars, and watched two gay sons negotiate the AIDS epidemic.
There are questions I have always wanted to ask Mom about finding out about my HIV status during the darkest years of the pandemic, and how it felt for her to go through a family AIDS tragedy. In my video interview with her (above) from last year, she never flinches at the questions.
This Mother’s Day, I hope you are fortunate to have a supportive mother to call or remember fondly. Thank God, mine is not unique in her capacity to empathize or love unconditionally.
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PLUS…
Exactly 21 years ago today, my friend Jonny Wood (right) tested HIV positive. Like many of us, he has channeled his gratitude for his good health by giving back to his community, and next weekend Jonny will participate in the grueling AIDS Ride to raise funds for the Emory Vaccine Center. You know I never hit you up for donations, but if you can afford even a modest contribution, his official web page for his AIDS Ride makes it really easy and secure to donate. No donation is too small, my friends. Isn’t it amazing that so many of us who lived through the dawn of this epidemic are not only still walking and talking, but riding their bikes for hundreds of miles in hopes of finding an effective vaccine? You go, Jonny.
Larry Kramer’s searing indictment of society’s response to AIDS in its early years, The Normal Heart, is back on Broadway and just racked up five Tony Award nominations, including for Ellen Barkin (right). “Powerful” hardly describes this primal scream of a play, and its fitting that this 1985 masterpiece has been remounted as we commemorate 30 years of the epidemic and as our community commitment to AIDS continues to be diluted by time and treatment advances.
As always, my friends, please be well.
Tags: aids, family, gay, gratitude, help others, recovery, research
Posted in All Other Video Postings, Family and Friends, Living with HIV/AIDS, My Fabulous Disease | 6 Comments »
Walmart Gets Better.
Wednesday, March 23rd, 2011
They always say time changes things, but you actually have to change them yourself.
– Andy Warhol
Yesterday I had a conference call with Walmart public relations manager Ravi Jariwala, and Crosby Cromwell, a manager for constituent relations. We discussed the fact that I wasn’t able to use the word “gay” in my review on the Walmart web site for the new, marvelous book It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living.
Oh, and I kind of blogged about it across the whole wide world on all sorts of LGBT sites, saying how much it pissed me off.
“I apologize that this situation has been created,” Ravi began. “It was a systemic oversight, in which ‘gay’ was on a list of filtered words. Certainly it makes absolute sense for you to include this word in your review… This is a no-brainer for us.”
He said other nice things. Crosby said nice things. No one laughed at me or called me names. They were focused on resolving the issue and pledged to have their list of flagged words changed within 24 hours.
I’m pleased to report that “gay” is now a perfectly acceptable word to include in posted comments on Walmart’s site. Other words have also been cleared, including lesbian, homosexual, bisexual and transgendered. And my review of the book, as I originally wrote it, has been posted on the Walmart site.
Here is Walmart’s official statement on the matter:
Recently it was brought to our attention that Mark King was unable to complete a review of the book “It Gets Better†on Walmart.com. We regret that a filter did not allow his review of the book to post and we quickly worked to resolve this technical issue.
We reached out to Mark directly to discuss the issue and, as an extra measure, we have reviewed the system to ensure that it will allow the use of all appropriate words related to sexual orientation and gender identity.
There is probably no national retail chain with as problematic a reputation as Walmart, and I can only imagine the topics that other advocates would have wanted me to broach with these corporate representatives. But I had one issue, one specific complaint that I asked to be addressed. And on this day, on this issue, Walmart did right by the LGBT community.
Now, everybody go buy It Gets Better.
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It’s impossible to overstate the impact Elizabeth Taylor has had on HIV/AIDS awareness and funding since the earliest days of the epidemic (Ms. Taylor died earlier today).
Since the early 1980’s, when people were still wearing masks and gloves around AIDS patients, Ms. Taylor (Elizabeth to her friends, never Liz) has been at the forefront. She organized the very first “commitment to Life” event in 1984 for AIDS Project Los Angeles (APLA) — and while doing so, learned her friend Rock Hudson was dying of the disease. She co-founded the American Foundation for AIDS Research (AmFAR) in 1985, and her own Elizabeth Taylor AIDS Foundation in 1993.
Oh yeah. And she was an Oscar winning movie star, the likes of which we may never see again.
I watched her walk onstage, in evident pain from chronic back problems, at an APLA event in the late 1980’s in Los Angeles. “With every breath of my being,” I remember her saying, “I will fight this disease and for the rights of people with AIDS, until the day I die.” And that, my friends, is exactly what she did.
Tags: aids, culture, gay, help others, politics, research
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 14 Comments »
A Very Special One-Year Anniversary Posting!
Tuesday, March 8th, 2011
When Mark first started My Fabulous Disease, I was pretty sure it was going to directly result in the destruction of humanity. One year later, we’re all still here.
I can’t believe I lost that bet.
Myles Helfand, Editor, The Body, The Complete HIV/AIDS Resource
My father always said, “Raise your hand. Ask the stupid questions. Don’t be afraid to make a fool of yourself.†If he isn’t rolling in his grave today, he’s certainly shifting a little, because if there’s one thing I’ve tried to do with my blog it has been to ask basic questions of others — and reveal everything I can of myself. The result has been a really gratifying experience sharing my life as an HIV positive gay man in recovery from addiction.
One year ago, I launched “My Fabulous Disease,†but the site was birthed and nurtured by the talented staff of TheBody.com. I have been contributing to TheBody for more than a decade as a writer, and producing videos for the last several years. For that I am indebted to Bonnie Goldman, the founding editor of The Body, and to the current Community Manager, Olivia Ford.
In this special video episode, I have some fun answering the most frequently asked questions about my videos — and what it has been like exposing myself, figuratively speaking, to all of cyberspace. The bottom line: it has been an honor to reveal, report, and ruminate on life’s challenges and joys as an HIV positive man.
I realize I’m not exactly an expert in the science of HIV or even a lot of the psycho/social issues involved. What I am, though, is curious. So I’ve tried to trust my own instincts and “ask the stupid questions†my Dad was talking about. Whether it was meeting teens at the AIDS conference in Vienna, exercising with fitness expert Nelson Vergel, or interviewing activists at the recent ADAP summit, I let my curiosity guide me.
Sure, I’ve bombed a few times with my videos. It’s been a learning process, and sometimes I misjudged a topic somehow, or just plain create a boring episode. Trust me – or ask anyone at TheBody, because they know how I worry – I keep close tabs on the comments and on the number of hits. And I’m constantly second guessing my choices. As much as I want to trust my instincts alone, I can’t help but want to be popular.
The episodes that mean the most to me have been the ones which were the most personal and didn’t even focus on my HIV (like “Facing Change,†about leaving Atlanta to renew a relationship, or “Taking Care of Hal,†about caring for my dying brother), or the ones that were the most practical and instructive (like “A Facial Wasting Update†about my facial filler process, or helping people select the best physician in “Six Tips for Choosing Your HIV Doctorâ€).
Along the way I have had the honor to meet people working as activists and elected officials and advocates around the world. How can I not be grateful and happy when I meet such smart and dedicated people? I know our HIV/AIDS crisis isn’t rosy and I know people are suffering. I also know without a doubt that we are in committed, loving hands the world over.
Let me leave you with this: we all have a story to tell. It is the story of how HIV/AIDS has affected our lives. Please, my friend, please tell it. Write an article or speak out on World AIDS Day. If you’re more private, maybe you could just explain to a nephew what it was like when you once lost a friend to AIDS. Maybe it is as simple as asking your friends if they have been tested lately, and why it means something important to you.
There are so many people who write me, and they thank me for giving their experience a voice, because they can not speak out. If you are blessed with the opportunity and ability to share your experience, then please join me. There is so much room, so much loving space in this world, for your voice and your story.
You don’t even have to dress in drag when you tell it. It just helps.
Please be well,
Mark
“A year of My Fabulous Disease isn’t nearly enough. You’ve had the courage to address publicly, with your words and videos, the stuff a lot of gay men and people with HIV are accustomed to only thinking about.”
Sean Strub, Founder, POZ Magazine
Your blog provides a limpid stream of good advice and optimism for anyone who stumbles into it. Your take on living with HIV is clearly the only one worth having, because you manage to inspire and annoy exactly the right people.
Gus Cairns, Editor, HIV Treatment Update
Here’s to many more years of Mark’s disarmingly honest, charmingly sincere, frequently bittersweet, and, above all, community empowering video blog.
Edwin J Bernard, journalist and blogger
Happy Birthday to My Fabulous Disease! You’re just what the doctor ordered.
Robert Breining, Founder, POZIAM Social Network
I feel as if My Fabulous Disease is a sister site to “my glamorous HIV” way of life. More importantly, you’ve been able to create much needed dialogue within the community, and provide information with substance. We love you up here in Canada.
Brian Finch, Founder, PositiveLite
Laughter and lightness of heart have made a comeback in my life, thanks to your nutty taste. I have been reminded often that although our common condition is life (and death), it is no longer life OR death.
Rod Rushing, “On The Ten†Treatment Education Network
If Albert Schweitzer and Joan Rivers had a son, it would be you! Healing and outrageous all at once. Keep “curing” us with “My Fabulous Disease.”
Chris Glaser, author, “The Final Deadline: What Death Has Taught Me about Life”
You and your blog are such an inspiration to others whether they are infected with HIV or someone who is still negative. We are also proud to have you as one of our Dab the AIDS Bear’s Ambassadors of Hope!
Dab Garner, Founder, Dab the AIDS Bear Project
Happy Birthday! You are doing such a great job at portraying the face, humor and humanity behind a terrible disease that will continue to proliferate in our community if people like you don’t continue to remind the rest of us that it still exists.
Zack Rosen, Editor, The New Gay
Tags: Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, Radiesse, recovery, Recreation, research, serosorting, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 14 Comments »
Touring an HIV+ gay sex club. Plus: the porn stars that got away.
Tuesday, March 1st, 2011
The idea that HIV positive people still want sex is as old as The Denver Principles, the 1983 manifesto drawn up by gay men with AIDS that demanded “as full and satisfying a sexual and emotional life as anyone else.†The document also stated that people with HIV/AIDS have an ethical responsibility to share their status with others.
Fast forward to today, and HIV positive gay men are as open as ever about their status and their sexual preferences (setting aside, if we can for the moment, the increased stigma and discrimination facing HIV positive people of all stripes who disclose their status these days). And those sexual choices may not include HIV negative people at all, thank you very much.
Last year I taped a tour of a sex club that hosts a monthly “Poz4Play†party, and sat down to interview Bill, the party’s disarmingly unflappable host. In this video blog (the video, above, is PG rated but the language is explicit), I revisit the tour and get an update from Bill about the strong reaction to the original video, which includes a frank conversation on barebacking, the risk of other STD’s, and serosorting.
Serosorting, or limiting sexual partners to those who share your HIV status, has become the de facto prevention technique for many gay men with HIV. Research indicates that the tactic may have value in containing the spread of HIV, but as you might guess, it isn’t so effective when it comes to HIV negative gay men who attempt to serosort amongst themselves. People who claim to be negative are often wrong, misinformed or simply lying. HIV positive men who claim to be positive are less likely to be wrong about that fact.
On an important side note: is avoiding HIV enough? Research indicates that poz-on-poz sex is much more likely to include barebacking (unprotected sex), and that means the potential of pitting a sometimes compromised immune system against other sexually transmitted diseases. If the idea of catching gonorrhea simply makes you feel nostalgic, what about (the far more dangerous) Hepatitis C? A recent study found that 75 percent of new hepatitis C virus (HCV) infections in HIV-positive men occurred in those with no history of injection drug use (IDU) – the more typical transmission route for HCV. Barebacking is the suspected culprit.
Everywhere on the gay hook-up radar, positive men are asking, telling, and serosorting. “Disease free, UB2†in online profiles is being countered by the cheeky “HIV positive and plan to stay that way, UB2.†Meeting sites are engaging in some serosorting of their own by offering poz dating and hookup options.
And over at the gay bareback porn company Treasure Island Media (TIM), director Paul Morris has named it “the year of living positive (sic),†with a series of videos featuring openly HIV positive actors. While one might appreciate Mr. Morris’ enthusiastic wish that everyone “fuck freely and without fear,†he’s a little light on the real-life implications of such a lifestyle.
I exchanged e-mails with Paul Morris in an attempt to interview a real-life couple he just re-signed to exclusive bareback video naughtiness. The couple includes an HIV negative top and a positive bottom, and I thought this would be a great opportunity to educate gay men by going “behind the scenes†and speaking to these two actors in a way that focused on their real life and didn’t demonize them.
Paul was complimentary of my blog and confident that his actors would communicate with me if I would e-mail my questions to them. I did so, and my queries included: how big an issue was HIV to them? Did one worry for the other’s long term health? Was the positive partner on meds? How did they handle feeling judged by those who disagreed with their bareback porn star habits?
Note to self: do not attempt to “get real†with bareback porn studs or their handlers. I never heard from the actors, or another peep out of Paul Morris. His silence betrays his grandstanding on the topic (his own press release gleefully refers to him as “universally reviled,†which would look great on his name tag at the next Gay Erotic Expo). Or, perhaps Paul Morris really does know his audience, and figures they’re uninterested in his stars once the DVD is back in the sock drawer.
It’s also possible Treasure Island Media is just distracted with appealing their recent $21,000 fine by California OSHA for, among other things, not developing procedures for things as basic as Hepatitis B vaccinations. Maybe the Oscar winning song is right, and it really is hard out there for a pimp… or for a porn empresario.
Please be well,
Mark
—————————————————–
For another view of gay men, porn and barebacking, check out my most Googled post of last year, “Did the Bareback Time Machine Kill Chad Noel?†It is a melancholy epilogue on the brief life of a gay bareback porn star (right) and what his childhood friends remember about him most.
One of my favorite HIV sites, LifeLube, has started an ongoing series called “Andrew’s Anus,” and it’s about sexual health for gay men and the human papillomavirus, or HPV. But wait! The series is written from the point of view of Andrew’s anus! It’s fun and witty and has great information and I hope you’ll check it out.
There’s a lot in the news about marketing the female condom to gay men. If you’d like a frank demonstration on using the appliance for anal sex, check out my video from AIDS2010 in Vienna with Wendy of The Pleasure Project (right). She leaves no question unanswered, and trust me, I ask them all. Our interview begins at the 4:05 mark.
Mike Barr has returned to the pages of POZ Magazine, or at least to their web site, as a blogger on the topic of Traditional Chinese Medicine and HIV/AIDS. His knowledge on HIV treatment is stellar, so if you have any interest in eastern approaches, his blog would be an excellent start.
Tags: aids, barebacking, culture, gay, hiv, research, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 12 Comments »
My Fabulous Disease: The Complete Video Collection
Tuesday, February 15th, 2011
Here is a brief description and link to the entire collection of My Fabulous Disease videos, stretching back to the premiere episode in 2008. The videos have been viewed in classrooms, at conferences and in support groups, and you’re welcome to re-post and share with proper credit.
This list is always available to you for browsing — just look under Categories on your right for “A LIST OF ALL “MFD” VIDEOS.”
Sailing the 2011 HIV Cruise Retreat. November 15, 2011. I realize how fortunate I am. So many of us are not able to take the time or devote the money for a cruise like this. It’s my hope that this video blog will inspire you to seek community, in whatever way you can, and never forget that a sense of humor sure does help the journey. And what a journey this 7-day Caribbean cruise was! There was plenty of social events, educational workshops, excursions to the shores of various islands, and let us now forget the parties — The Mad Hatter Party was worth the fare alone, but then The Blue Party, hosted by my comic alter ego Anita Mann, reached new levels of madness and joy. You can get more info about the event at www.HIVCruise.com. The event welcomes men and women, gay and straight, and they are a truly inspiring, fun filled group.
Divorce, Stress, HIV… and no jokes. November 3, 2011. This is a rather personal blog video, there’s no doubt about that. I was even a little apprehensive because it doesn’t offer the usual helpful tips or the “entertainment value†of my other videos. But one of my problems has always been trying to be the life of the party when I’m not feeling it. So I was relieved and pleased that there was so much love for this video, in which I sit down with my friend (and a therapist) David Fawcett to discuss divorce, loss, HIV, and what to do when life isn’t all that damn fabulous. This is a different Mark than you might be used to, unplugged and exposed.
Finding Support in an e-Patient World. September 26, 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. In this video blog from the e-Patient Connections conference, you get to meet some of the marvelous people who are leading the charge. And guess what? It turns out that there are people living with a wide variety of conditions who are online and advocating for themselves and others. This moving and funny video will teach you something.
7 Ways to Save Money on Your Meds. August 16, 2011. With all the doctor appointments and wellness activities we engage in, living with HIV/AIDS can be a full-time job. And the truth is, it doesn’t pay very well. We’ve all been feeling the pinch of tough economic times. So I hope you’ll find some savings in this video blog, “7 Ways to Save Money on Meds,” featuring Jason King, a patient advocate for the AIDS Healthcare Foundation. Jason has some tips that your pharmacist may not be telling you.
I’m Gonna Wipe That AIDS Right Off of My Face. August 2, 2011. Most of us know “the look,“ and I’ve started to get it. It’s the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications. Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I’ll do what I can to wipe that shit off my face. In this video, I revisit Dr. Gerald Pierone for a treatment of Radiesse and Sculptra, and get information about the more permanent facial filler, Artefill.
The Entire 2011 ADAP Conference in Nine Minutes! July 19, 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! 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.
Should AIDS Activists and Pharma just get along? July 12, 2011. 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.†This video on treatment activism mulls over the conflict, provides some historical context, and keeps the red spray paint at hand, in case the activism needs to go “old school.” This became the most “shared” blog posting of mine to date, and very quickly, too. I think people responded to the mix of education and edgy advocacy.
Dab Garner’s 30 Year Story of Survival. June 28, 2011. This video is quite simple, really. One man explains to you what happened to him, from becoming one of the first AIDS patients in San Francisco to his life today in the service of others with HIV. Dab Garner has clearly put things into perspective, and his calm manner shows a man at peace with his fate, his survival, and the ghosts around him. It’s an amazing story, actually. And considering the importance of passing our history down to younger people, it might not be a bad idea to share this video with someone you know, maybe even someone under 35 years old.
Vacations and Retreats for People with HIV/AIDS. April 28, 2011. Summer is approaching and vacation plans are being made – but have you ever considered a retreat or getaway with other people living with HIV/AIDS? It might sound odd to seek out a vacation event just for people with HIV. For me, my status is only a part of who I am, and I’ve gotten pretty good at disclosing when I need to. But for many of us it’s tough getting past that hurdle. So joining a group of others living with HIV might be a fun solution if you’re looking to make friends with other people living with HIV and build your support network.
The Hard Facts on Erectile Dysfunction: Pills, Pumps and Prosthetics. April 6, 2011. My friend and HIV fitness author Nelson Vergel (”Testosterone: A Man’s Guide”) returns for another visit, this time to discuss erectile dysfunction and HIV, including the treatments available and issues specific to those of us with HIV. He also gives detailed information on the use of testosterone replacement therapy. Quite an informative video.
A Special One-Year Anniversary Posting! March 8, 2011. After weeks of teasing you with announcements and Top Ten listing, I finally put an end to milking the occasion with this, a special video celebrating one year of blogging on my site. This is lightweight, no doubt, but I do answer the most popular questions I get about myself and the blog, and it gives me a great opportunity to thank you, my readers and watchers. It has indeed been a great first year, and this video demonstrates my gratitude.
Touring an HIV+ Gay Sex Club. Plus: The Porn Stars that Got Away. March 1, 2011. I revisit a video tour of a public sex venue from last year and catch up with the host of “Poz4Play,” a monthly gathering of HIV positive gay men. Along the way we discuss serosorting (limiting partners to those who share your HIV status) and if these parties offer real prevention or a false sense of security from other STD’s. Meanwhile, I share what happens when you get “too real” in your line of questioning with porn stars (hint: they stop returning your e-mails).
The Hilarious Idiocy of Anonymous Gay Sex. February 7, 2011. When someone brought this YouTube video to my attention, I laughed out loud at its amazing recreation of an online hookup between two gay men, and the level of stupidity that is often involved when negotiating sex. The person who created this video prefers the anonymity of cyberspace, but I think he deserves a medal for perfectly demonstrating what we’re up against when it comes to making intelligent sexual choices.
Hitting the Gym with HIV Fitness Expert Nelson Vergel. February 3, 2011. Fitness expert and author Nelson Vergel gets my growing waistline to the gym for a lesson in aerobic activity and weight training and the benefits and risks to those with HIV. Part Two in an ongoing series of fitness and nutrition videos with Nelson.
AIDS Activism 101: Steps to end the ADAP crisis. January 31, 2011. An interesting and practical look at the steps to take to have a voice with your elected official, by getting the activists at the 2011 ADAP Summit to cle4arly explain what was happening with the program, and then easy directions to contact your elected official about this (or any!) advocacy issue.
Five Things About HIV (They’re Not Telling You). January 18, 2011. Activist and POZ Magazine Founder Sean Strub stops by for a game of ping pong and then a very provocative discussion of why public health campaigns keep getting it wrong in terms of messages to gay men, and some things that gay men should know that have not been widely reported.
HIV Fitness Stud Nelson Vergel Raids My Fridge. January 11, 2011. The first in a series of fitness and nutrition videos with HIV fitness expert Nelson Vergel. In this video, Nelson raids my fridge and gives simple, practical tips on eating right, mysterious “diet” labels, and the importance of proper pooping!
Recovering Joy. December 14, 2010. Why include a video of my performing in drag at a Christmas benefit for people in recovery from drugs and alcohol? Because it’s funny. And because I wasn’t very funny when i was an active addict, and there are a lot of wise messages contained in this very funny rendition of “Twas the Night Before Christmas,” as read by my alter ego, Ms. Anita Mann.
Once, When We Were Heroes. November 28, 2010. This is an essay that won a 2008 award from the National Lesbian and Gay Journalism Association, for best written piece of the year, but I created this video version because I wanted another way of sharing its message. It potently describes the early days of the AIDS epidemic, and draws a bittersweet line between life than, and now. The best of my work.
My T-cells could use a facelift. November 11, 2010. This is the video that might be my personal favorite because it is funny and speaks to my issues of aging and regret and selfishly trying to hold on to old behaviors. Watch as, through video editing magic, my mature self and my young, selfish self argue about the effects of aging in a gay culture. Funny and wise, I think.
My Video Report aboard the HIV Cruise Retreat. November 1, 2010. During my maiden voyage as M.C. for the HIV Cruise Retreat, I didn’t know what to expect. But as you’ll see in this rollicking video diary, our group bonded and laughed and learned. Absent were so many of the social tensions that usually follow a group of largely gay men around. We all just cared for one another and had a terrific time. I hope I can return every year!
The Price is Right, 30 Years after Coming on Down. October 18, 2010. Would you believe I won a car on the Price is Right, back in 1980 when Bob Barker still had dark hair, and I have the video to prove it? I sure do! You’ll watch the video and get to read an essay about the entire experience, and how it haunted me for years, when the advent of AIDS ruined all those wonderful plans I had told Bob Barker I was making for my life.
In Praise of HIV Negative Gay Men. October 13, 2010. Oh man, did this one ever get me into trouble. Here I thought I had such a great idea, doing a video to praise an encourage HIV negative gay men for staying that way, and acknowledging the fact that, in many ways, their struggles without HIV are harder than mine with it. Oops… this video offended just about everyone, mostly for a perceived sarcasm in my delivery. I’ll let you watch and decide for yourself.
The 2010 HRC Dinner (in under four minutes!). October 10, 2010. I attended this national dinner for the Human Rights Campaign in Washington, DC, and had fun teasing the event by presenting the bloated evening in less than four minutes. My snarkiness was rewarded — it has become my most-watched video because, as it turns out, there appear to be quite a lot of people who like people being snarky about HRC. Just sayin’.
Fighting Back Hard Against Bullying. October 5, 2010. This essay about gay bullying includes the video “It Gets Better with the King Brothers,” the video I made with my (also gay) brother Dick. We had no idea it would become one of the most watched videos for the project, and it now slated to be included in the “It Gets Better” book out in March, 2011. People seemed to like our brotherly love!
Condoms & Bareback Sex at the Gay Summit. (September 20, 2010.) As gay sexual advocates met at the annual Gay Men’s Health Summit in Ft Lauderdale, there was an assortment of workshops and speakers focused on a golden oldie: promoting condom usage among gay men and how to address barebacking. Included is an interview with activist (and one-time bareback poster boy) Tony Valenzuela.
My Forbidden Love for Gay Monsters. September 28, 2010. This essay on my crush on Quentin Collins from Dark Shadows, and love for horror movies, gave me a chance to show off a video I produced for a stage production of Night of the Living Dead. I had such a blast making it!
HIV Stigma (and my lover Jack) at USCA. September 14, 2010. At the United States Conference on AIDS held in Orlando, I learned about a new project to address HIV stigma (which seems to be growing, not shrinking) and the reasons why. I also provide a tour of the conference itself and get some designs lessons from Jack Mackenroth, the Project Runway hunk who is HIV positive and is behind a public awareness campaign.
Sex While HIV Positive: The New Criminals. September 6, 2010. This video was significant to me for two big reasons: making it introduced me to the heroic activist Sean Strub for the first time in person, and it gave Sean a chance to very clearly outline a misunderstood topic. At a time when treatment successes and public acceptance of HIV/AIDS has made strides, why are there horrific laws that not only unfairly fault those with HIV, but are based on bad science?
Does the Gay Men’s Health Summit make me look fat? August 26, 2010. Also while at the Gay Men’s Summit in Ft Lauderdale, I attended a workshop on body image and gay men — and not a moment too soon, since my expanding waistline was threatening what my culture (and I) valued about the perfect body.
AIDS2010 for Dummies: An Entertaining Review. August 3, 2010. This is a collection of ALL the videos I produced while in Vienna for the 2010 International AIDS Conference, and it’s quite a colorful collection. I left the research-oriented reporting to others and followed the people, sights and sounds of this amazing conference — teenagers from around the world teaching about condoms! An AIDS prevention musical featuring sex workers (STAR WHORES)! The rallies and the protests and the celebrities are all here. My thanks to TheBody.com for sending me to this event as their correspondent!
The Gay Pride PSA (that will never air!). June 15, 2010. What begins as a funny reflection of what gay pride has meant to me (organizing a parade starring ME as a drag queen — when I was eleven), becomes something much, much different in this short video. I guess the wreckage of my drug addiction was still haunting me. What results is a sweet message about PRIDE that suddenly punches you in the gut. I’m proud of this one.
Six Tips for Choosing Your HIV Doctor. May 28, 2010. When I began making plans to move from Atlanta back to Ft Lauderdale, the most daunting task was having to find the right doctor in my new city. Luckily, my Atlanta physician, Dr. David Morris, walked me through some practical tips that anyone can use. Watch his advice — and then watch as my cameras capture my very first meeting (really!) with my new doctor in Ft Lauderdale, as I follow the tips and grill him with questions!
What It Feels Like for a Mom. May 4, 2010. How does our HIV status affect the ones who love us most? What fears are they not telling us? I’ve always wondered, so I sat my mother down for an interview about my HIV, what it was like raising two gay sons, and how it affected the family when we experienced our own AIDS tragedy. She never flinched at the questions, and her answers are sincere and revealing.
Has My AIDS Crisis Ended? April 18, 2010. As the annual AIDS Walk strolled through my community, I remembered the crisis mentality of earlier Walks — and how getting myself to a Walk at all no longer seemed so important. Has my “crisis” lifted? As part of this video I sat down with U.S. Congressman Barney Frank and asked him about the difference between the emotional toll to gay men, “then” and now.
Facing Change. March 25, 2010. While packing for my move back to Ft Lauderdale from Atlanta, the chore of separating my belongings (”deciding what to keep and what to throw away…”) brings up some emotions (it also brings up a face in a box, more than ready to tease me for feeling blue). I give the packing a rest long enough to get honest about the reasons for the move, and the beauty of second chances.
The Real Poz Guys of Atlanta. March 11, 2010 (originally posted on TheBody.com on February 23, 2010). Another fun evening of friendship and chocolate and secrets with my supportive group of friends in Atlanta. This time, we bake brownies and talk about everything from our doctors to our love lives, and then have Show ‘n Tell! A great example of the value of strong social support for people living with HIV/AIDS.
Anita Mann’s Infamous TV Set Number. (Filmed in 2008). Set to Nancy Lamott’s “Don’t Get Around Much Anymore,†my drag queen alter ego battles herself locked in a TV set in this, her finest hour on stage. This performance was taped at a fund raiser for gay and lesbians in recovery from drugs an alcohol, since Anita (and I) are in recovery from crystal meth addiction. Laughter isn’t just good for my t-cells, it is also vital to my recovery from addiction!
A Facial Wasting Update. (Originally appeared on TheBody.com on February 2, 2010). In a previous video I took you along to my first appointment with Dr. Gerald Pierone to address my facial wasting, and that video focused on how my wasting affected me personally. This video, told more from the perspective of Dr. Gerald Pierone, takes you along on my third visit for facial fillers to treat my wasting (lipoatrophy) with Sculptra and Radiesse. Hope you’re not afraid of needles.
Serosorting and Sex Clubs. (Originally appeared on TheBody.com on January 4, 2010.) This quickly became my most-viewed video blog to date. Was it the intelligent discussion about serosorting (limited one’s sexual partners to those who share your HIV status), or was it the guided tour of a gay sex club? Hmm. At any rate, Poz4Play sex party host Bill Trimble leads me through the titillating hallways of his monthly sex party “exclusively for HIV positive gay men.” Then we have a seat next to the sling and enjoy an equally interesting conversation about the sexual choices gay men make — and why Bill believes he is providing important HIV prevention.
My Search for Meaning. (Originally appeared on TheBody.com on May 27, 2009.) Such a tiny topic, eh? And yet when you are faced with such tragedy like the AIDS crisis you can find yourself asking, “What’s it all about?” I’ve shared my frustration with the topic and then conduct interviews with psychiatrist Dr. Jesse Peel, AIDS physician Dr. David Morris, and gay theologian Rev. Chris Glaser. Interesting food for thought.
You Gotta Have Friends. (Originally appeared on TheBody.com on April 22, 2009) So many people wrote to express their appreciation of this video and its simple plot: I invited four friends over for dinner and conversation, and all of us are living with HIV. The intimacy of the conversation is real; these are, in fact, good friends of mine. We cover everything from how we disclose our HIV status to friends and dates, to what our mothers think (and which ones are supportive). Antron, Craig, Eric and James demonstrate that in the sometimes stressful world of HIV, friends really matter.
Treating My Facial Wasting. (Originally appeared on TheBody.com on March 25, 2009.) After dealing with facial lipoatrophy (wasting) and seeing it so evident in my videos, I decided to do something about it by visiting Dr. Gerald Pierone in Vero Beach, FL and being treated with injections of facial fillers. Facial wasting and fat displacement are common side effects of both HIV infection and the medications used to treat it. This topic was updated in a later video when I returned to Dr. Pierone, “Facial Wasting Update.â€
Mark’s R-Rated Sex Pig Blog. (Originally appeared on TheBody.com on January 28, 2009.) Barebacking, glory holes, casual sex and disclosing my HIV status are all discussed in this bawdy, provocative episode. Aging and negotiating sex as a gay man is as funny as it is frustrating, if you ask me. My favorite part: negotiating safer sex through a glory hole. The video is notable for another, unrelated reason: I was only one month clean from my crystal meth addiction and you can still see the ravages of drugs on my face, which is a lesson all its own.
The Drug Addict Takes a Holiday. (Originally appeared on TheBody.com on January 13, 2009.) Ouch. This one is tough for me to watch. After my former partner Ben ended our relationship when I ended up in drug rehab, I visited him in the home we had shared in Ft Lauderdale and tried to make sense of our past — and what may happen in our future. This video is also a visual testament to age, past drug abuse and HIV meds catching up with me, as evidenced by the lipoatrophy (facial wasting) so apparent on my face.
Taking Care of Hal. (Originally appeared on TheBody.com on November 20, 2008.) I never dreamed I would be spending two months in Michigan helping my oldest brother through chemotherapy. But it got me outside of my head, beyond my own HIV diagnosis, and helped me focus on helping someone else. Sometimes, that’s the best medicine of all. (My brother, Harold R. King, Jr., passed away in the Fall of 2010.)
Oprah Comes Calling. (Originally appeared on TheBody.com on November 10, 2008.) In this, only the second episode of my ongoing video series, Oprah reaches out to touch… me! It leads to bittersweet memories of Louise Hay (the “Hayrides†of the 1980s in West Hollywood), and of my gay brother Dick and his partner’s struggle with AIDS. Also, I get an annual physical with Dr. David Morris. Interesting in that you can see me trying to find a balance between humor and helpfulness.
The PREMIERE of My Fabulous Disease! (Originally appeared on TheBody.com on September 24, 2008.) In September of 2008, my video series “My Fabulous Disease†debuted on the best HIV resource on the net, TheBody.com. Here is that episode, which introduces me as a gay man in recovery living with HIV/AIDS. Little did I know what video adventures would lie ahead!
Tags: acting, Aging, aids, barebacking, culture, drag, family, gay, gratitude, help others, hiv, lipo, Louise Hay, meth, Oprah, physical, physician, politics, Radiesse, recovery, Recreation, research, Sculptra, serosorting, Sexuality, testing
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