Surviving Bleeding Disorders and HIV
October 4, 2013
This month I wrote an article for Poz.com about what it was like for three young men, who were born in the 1980s with a bleeding disorder. Mark tested positive at an early age and wasn’t expected to survive childhood- he is now the proud father of twins. Nick was born just before blood products were made safe- he shares a harrowing near-death experience, while Justin was born just after blood products were made safe; he evaded HIV, but had to calm his mother down when she found out he was gay.
Thanks to all three for being so candid!
Hope everyone has a wonderful weekend.
False HIV Rumors About Miley Cyrus
October 4, 2013
Wednesday night a group of bottomfeeders from 4chan launched a cowardly, anonymous online campaign entitled “Cure For Miley”. The goal? Presumably it’s either to trick people into thinking the singer is HIV positive- Oh my God, how awful for her reputation, what an insult (dripping sarcasm)- or to shame her overtly sexual public performances.
Now, I’m no Miley fan. And yes, I could stand to see a little less of her tongue. Though, if someone had to be forced to never reveal their mouthsnake again, I’d banish Gene Simmons before I’d exile Miley’s flavor saver. Still, that’s not the story here- what pisses me off most about this campaign is that it’s underlying theme is: what could be more embarrassing and shameful than HIV?
Well, I don’t think HIV is embarrassing- or shameful. I’ve been living with it for most of my life. It’s a virus. A pesky one that can make life harder than it needs to be sometimes. But I do my best to stay healthy while dealing with the distraction of having to educate and enlighten people to the facts about HIV, while dispelling the rumors.
What is shameful and embarrassing? Posting anonymously online in an attempt to discredit, embarrass or shame someone else. Any jackass with no dignity or grace can do this. Look at YouTube Comments, do you think those people are happy with their lives? The loathsome losers who started “Cure For Miley” think they’ve done something great- all they’ve done is make stupid people laugh, and make some people with HIV roll their eyes and hang their heads.
Like Miley? Hate Miley? It doesn’t matter. At least she’s out there, doing her thing, taking all of the criticism that comes when you reach the top of that chosen profession. Maybe actual names and faces will be attributed to this lame campaign, maybe not. Either way, I for one am not letting these idiots off the hook.My message to them and the rest of the ever-growing population of cowards who hide behind their screen names is very simple.
Die soon and make the world a better place.
Adventures in HIV Medication Part 2: The Lab Results
September 11, 2013
I posted a blog entry in late July about my decision to switch from week on/week off treatment of HIV to a continuous regimen that consisted of a lower dose of HIV medication. Well, this week I got my 6-weeks-in lab results and….
There’s good news and bad news.
The good news is that the 800 mg of Prezista (with a 100 mg booster of Norvir) did it’s job in keeping HIV under control. My viral load remained undetectable and my t-cell count jumped from 508 in May to 659- my third highest count ever. But the confetti that was supposed to fall from above got blown out the window by the ceiling fans. See, my hepatitis B viral load, which has been long dormant, awakened.
Hepatitis B hasn’t been an issue for me since the 1980s, when my main priority was perfecting my backspin and searching for slabs of cardboard large enough to break dance on. I feel like I’ve been performing all of the classics this summer, especially after the big hemophilia conundrum last month.
So, right now I’m weighing my options. Either stick with the Prezista plan and add a component that addresses the hepatitis B dilemma, or just go back to week on/week off. I’m not completely bummed out by this result, though it was bit surprising to hear from “an old friend” in hep B. That’s because I haven’t really felt any different over the last 6 weeks, which proved to be a very hectic time filled with company, that big show and then dealing with that hemorrhage… I just felt like my tired old self.
I’m wondering if that spike in hepatitis viral load has been a culprit in my low energy levels?
That’s why I’m leaning towards altering my current treatment plan. Prezista is obviously working for me on the HIV front. If I add something to the mix to address the hepatitis B I may be good to go. Will definitely keep you guys updated- and I hope this message finds you healthy and/or happy. As tired as I’ve been feeling, I know it’s of the utmost importance to keep my attitude positive. If you’re dealing with a medical hiccup, try to remember that as well. I know it can be hard when you aren’t feeling your best, but it’s harder to maintain your health and do what’s best when you’re down in the dumps.
Tommy Morrison and HIV Denialism
September 3, 2013
Last Sunday, Tommy Morrison passed to spirit. I don’t have firsthand information on the whys and hows, but I did read an article that said the cause was an infection that occurred when he had pectoral implants removed last year. His promoter, wife and even he himself continued to deny he had HIV until the very end.
I first became aware of Tommy Morrison in the early 1990s, when his boxing career was beginning to explode. He had unnatural power- and made for exciting fights because of his desire to trade bombs with opponents. Sometimes he detonated on them, other times he was rendered semi-conscious as a man counted to 10 in front of him…
In 1996, he tested positive for HIV. In 1997, he was interviewed by Poz Magazine, and he claimed that HIV was a harmless virus and the medications were the poison to be concerned about. I didn’t know his stance at the time, and in that same issue I wrote a column about Tommy. As a boxing fan, I was hoping he’d be joining my ranks as someone trying to shed light on the fact that you can have HIV and still have a normal life.
Instead, Tommy Morrison went all-in on conspiracy theories. After he was stripped of his boxing license and his HIV status was revealed to the world, he dealt with what many of us fear most: rejection. Professionally and personally he likely felt pain that even the confines of a boxing ring couldn’t match. He turned to the internet to research HIV, and that’s where he probably first heard of false positive HIV test results…
And that- after everything he’d already been through- sounded pretty damn good.
Tommy also tested positive right around the time that combination therapy was introduced. It’s now widely understood that AZT monotherapy, the standard course for treating HIV before “the cocktail” was pretty harsh. So, instead of heeding the advice of his doctor, Time Magazine’s 1996 “Man of the Year”, Tommy fired him. And started taking vitamins as he attempted to put to rest the hard living that had derailed his career long before he tested positive for HIV.
But with each appearance in public over the last several years, he began to look weaker as he entered his 40s. And as late as February of 2011, he continued to claim that he wasn’t HIV positive.
In the end HIV denialism played as big of a role- if not bigger- in his decline than HIV itself.
I wish Tommy had chosen to fight HIV head-on, the same way that he fought opponents in the ring. Instead, he was charmed by the idea that he was living with a harmless virus- and then further charmed by the idea that he didn’t have a virus in his body at all. And now, at the young age of 44, Tommy Morrison is gone.
And that is very sad.
Support the Ryan White Care Act
August 26, 2013
Last month I did a video for AIDS Healthcare Foundation about PEPFAR. This month I was once again excited by the topic they presented- the need for continued funding of the Ryan White CARE Act.
Learn more about it by watching the video above. For your convenience, I’ve posted the transcript of the video below.
Hope this finds you well!
In 1984, 13-year-old Ryan White changed the face of AIDS by speaking out
against intolerance. Following his death in 1990, the Ryan White CARE
(Comprehensive AIDS Resources Emergency) Act received vast bipartisan
support and today is the backbone of our fight against HIV/AIDS in the
United States, providing lifesaving treatment and prevention services to
nearly half of all people living with HIV nationwide.
In September 2013, the CARE Act is set to expire. In the four years since
its last reauthorization, we have learned that the key to reversing the
HIV epidemic begins with getting tested for HIV, followed by linkage and
retention of care. This ultimately renders patients noninfectious,
allowing for a longer, happier life. Sounds good, right?
Sadly, gaps in this continuum leave a majority of HIV-positive Americans out of
care: 20% don’t know their status, and of those who do only 40% see a
doctor regularly, leaving less than 30% of HIV-positive people in
America with an undetectable viral load. In July 2013, President Barack
Obama issued an Executive Order for federal agencies to scale up their
Reauthorizing the Ryan White CARE Act is critical to
achieving this goal. Providers like Medicaid and private insurance do
not cover many needed services and do not have the HIV expertise of the
CARE Act to provide everyone with the same level of care.
Keep Ryan’s legacy alive — show Congress that America supports the reauthorization of the Ryan White CARE Act.
Never Forgetting Sean Sasser, 1968-2013
August 8, 2013
Sean Sasser, whom many of us were introduced to through our televisions in 1994 via The Real World, has passed to spirit at the age of 44. My heart goes out to his friends, family and partner, Michael Kaplan.
Sean was one of my heroes. When The Real World: San Francisco aired on MTV in 1994, I had a year’s worth of high school diploma under my belt but no real plan about what I wanted to do with my life, which made me not too much different from most 18-year olds. I was a fan of the reality show, The Real World, and loved the previous season set in Los Angeles. When episode one of San Francisco came on, I quickly realized that I was in for an entirely different experience…
Pedro Zamora, one of the housemates, was HIV positive. He began dating Sean Sasser, who was also HIV positive. Pedro was an activist and educator, and Sean had a quiet, calm demeanor. I fell in love with both of them. They offered a glimpse into a future I desperately wanted- the ability to talk to friends about HIV (something I had not yet done at age 18) and finding a partner that I could share my life with.
That season of the show was a game changer for me. But before I could even process how the show had impacted me, Pedro Zamora passed to spirit. I was devastated. Just as I’d learned about a life that could be possible with HIV, I was also reminded of something that I feared…
When Sean Sasser was introduced to us, there weren’t any truly effective combos. As people with HIV, there was a sense that we were ticking timebombs. Yet, there was Sean Sasser, a year later at a televised Real World Reunion, calmly discussing he dearly departed partner. Stupid producers cut short Sean’s speaking time- hey, he wasn’t a roommate!- but once again I was moved by him. Judd Winick, one of Pedro’s friends and roommates, called for people to do something about HIV…
I sat on my bed, but I wanted to jump out of my skin and do something about HIV- not as me, though, as someone else. A few months later, I finally opened up. The impact of Sean Sasser and his Real World alum has never been lost on me. Before any of us could crack a laptop or iPhone and search “living with HIV”, there was that group of young people dealing with HIV, conveniently bringing the topic into our living rooms.
I needed that. And so did a lot of other people.
So thank you, Sean, for giving me hope that “poz Seans” can find love and comfort in their own skin.
In 2009, I shared a personal story on this blog about meeting Sean Sasser. You can read it here.
New Adventures in HIV Medication
July 30, 2013
In 2002 I made a decision regarding my HIV medications- I’d been on combination therapy for 3 years after receiving an AIDS diagnosis in 1999, and the HIV medication most certainly brought my health back. But at the same time, I was feeling the side effects and was concerned about long-term side effects.
At the time, I’d read a couple of things about structured treatment interruptions and heard Larry Kramer rant about HIV drugs at my friend Stephen Gendin’s memorial. Larry yelled, “I have no ass because of these drugs! We should all take our medication for one week, then take a week off so they get half the profits!” Needless to say, he was pissed off about more than just losing a friend that day…
I’m fortunate that my doctor and partner, Gwenn, were okay with giving a structured treatment interruption a try. I was quite relieved when my t-cell count continued to climb, even with a week off, and my viral load remained undetectable or very close to it. In 2009 I wrote a column for Poz about my experiences with week on/week off therapy. You can read it here.
All in all, I’ve been happy with the results of the experiment. But last year, it felt like time to try a new combination. So I switched from Norvir, Reyataz and Truvada to Complera, continuing the week on/week off schedule. After six months of experiencing changes in mood, from being more angry than usual to feeling depressed, I through in the towel and decided to go back to my previous combination. But the lack of energy on that combination- which was quite severe during the first week of July- left me a bit shaken…
I was texting with a trusted friend about all of this, and asked how he dealt with side effects. “I don’t really have any,” he replied. I followed up on email because I had so many questions, and he confided that he approaches HIV medications the same way I do, but has implemented the strategy a bit differently. Instead of a break from HIV medication, he takes less than is normally prescribed but doing so under the guidance and knowledge of his doctor.
Needless to say, I was intrigued.
So I spoke with Gwenn about it at length and once again huddled with her and my doctor, who researched the idea. We’ve all agreed to give it a shot, and for the last week I’ve been taking 800 mgs of Prezista with 100 mgs of Norvir. In about five weeks, I’ll be going in for lab work to see how things are going.
Am I scared to experiment with this? Not really. Partly because of the last ten years of how I’ve been taking my medications. In terms of effectiveness, every combo I’ve been on has done it’s job of attacking the virus and neutralizing its ability to wreak havoc on my health. I’m convinced that far better treatments- and possibly a cure- are on the horizon, and it’s not insane to think that could be ten to fifteen years off. But I’m not interested in sitting idly by- I know I have a great shot at being around for the next big breakthrough in HIV treatment, but I want to be in the best position to enjoy the time between now and then. I don’t like living in a haze, or feeling like I need a nap after a fifteen minute conversation with friends.
I know a large part of my health is simply the culmination of living with this virus since 1984. But I also know that decisions regarding treatment can also affect how I feel. And, simply put, in my heart and mind I know it’s time for a change. I don’t mind not having that week off from taking my pills, and am not worried about forgetting to take them every day.
I’ll keep you guys updated. Wish me luck, and I sincerely hope this finds you well.
What is PEPFAR? (Video)
July 24, 2013
I had the privilege of helping out AIDS Healthcare Foundation with this video on the importance of funding PEPFAR (the President’s Emergency Plan For AIDS Relief). Check out the video, and please go to Change AIDS Obama and sign the Change.org petition.
Watch the epic battle between PEPFAR and AIDS, and help in the fight!
Hope this finds you well!