Help Honor Ryan White’s Legacy- Takes One Minute
April 8, 2014
If you’d like to help others living with HIV and preserve Ryan’s legacy, the Ryan White CARE Act, then please consider signing this petition to continue funding the CARE Act. Here’s a video I did with help from AIDS Healthcare Foundation to explain just how important the CARE Act is.
Side Effects- To Change Meds or Not To Change?
March 16, 2014
Overall, I was happy with the results of my latest labwork. My t-cell count was good and my viral load was undetectable. And since last June, when I started on my paired down daily regimen of Prezista (800 mg) and Norvir (100 mg), I’ve felt pretty good: a lot less of the mental fog I’ve experienced on other meds.
But since June, I’ve had a few rough patches with hemophilia. In late July, I innocently slid into a booth at a restaurant and rammed my side into an exposed beam. It took about three weeks of treatments to get the bruising to subside. When my hepatitis B viral load spiked after enjoying 30 years of having no signs of hepatitis B problems- my doctors thought the new HIV drug regimen was the culprit. Turns out my mom’s hunch was right: that the blood product treatments, and not my HIV meds, were responsible for the hep B spike. After a few weeks of no no hemophilia medication, the hepatitis B viral load dissipated.
A couple months later I noticed a strange bruising on the outside of my foot. I couldn’t recall bumping it, and was surprised when the bruising got worse. Since I have moderate hemophilia, I usually can handle a moderate amount of bumps without them resulting in treatment. Fortunately, the foot hemorrhage was taken care of easily- one treatment at home and I was good to go.
Since December, I hadn’t had any problems until earlier last week, when I noticed blood in my urine. Never a good sign. Again, I treated at home, but contacted my local hemophilia clinic just to be safe. They suspected kidney stones and ran some labs- my clotting levels were normal (for me) and so was my kidney function. I’d looked up the potential side effects for Prezista, one can be the potential for more bleeding in people with hemophilia…
I really don’t want to switch medications. I like this regimen, but at the same time I don’t want to have to deal with another medical condition because of it. My initial plan last June was to go on the 800 mg of Prezista and, if it worked, take that down to a 600 mg dose. If the drug is the reason for this uptick in bleeds, then it stands to reason that less of the drug would mean less of the side effect.
I’m not too worried about giving this idea a shot, since it was part of my game plan to begin with. Basically, I’d make the switch from 800 to 600 mg, then get some labs done. If for some reason there’s a noticeable, adverse effect on my t-cell count and viral load, then I’d consider switching to another HIV medication. (If you’re curious about my decade of being on a structured treatment plan of one week on HIV medications followed by one week off, then read my Poz column about it here. It will shed some light on why I go outside of the box when it comes to HIV treatment.)
As is always the case for anyone reading this who is also living with HIV, it’s important to talk to your doctor openly about treatment options and side effects. I’m lucky to have a good relationship with my doctor, and feel very comfortable speaking with him about my concerns.
Why I Don’t Have Dallas Buyers Remorse
March 3, 2014
This year, The Academy Awards were once again touched by the hand of the AIDS epidemic. In 2013, AIDS activists rejoiced when How To Survive a Plague was nominated for Best Documentary. A decade before, Nicole Kidman won for Best Actress in 2003′s The Hours… and a decade before that, Tom Hanks got the nod for Best Actor in Philadelphia in what was, before this past weekend, AIDS’ greatest triumph at Hollywood’s biggest night of the year.
But a funny thing happened on the way to Oscar night…
When both Matthew McConaughey and Jared Leto won Best Actor and Best Supporting Actor at the Golden Globes two months ago, each actors’ acceptance speech failed to mention AIDS. Much like the trailer for the movie, there wasn’t mention of the medical condition that figures so prominently in the movie’s plot. And, as an AIDS educator, I get it- the word “AIDS” scares a lot of people. Get them in the theater and entertain/enlighten them by any means necessary.
In regard to the AIDS community’s outrage over the Golden Globes speeches and the omission of our struggle… I really didn’t get it. I don’t expect actors to be activists. They play roles, do the job and get in and out of character and on to the next role.
I saw Dallas Buyers Club in a theater, which was more than I expected after hearing about the movie months before its release. I figured it would be an indie flick that wouldn’t find its way to my hometown theater and that I’d catch it half-a-year later on Netflix. The fact that it got so much buzz after its release made me happy- friends of mine were going to see it on their own without me (the “friend with AIDS”) nudging them.
So last night, both actors won again on Oscar night.
Jared Leto mentioned the millions of people who died from AIDS at the tale-end of his acceptance speech, certainly making amends with a portion of the AIDS community… but Matthew McConaughey, the biggest winner, remained mum on HIV/AIDS. He also failed to mention the name of the man whose life he interpreted for the film. Matthew did mention God, and a vision of his father doing a little victory dance in Heaven for him. Which made me wonder: if pressed, could Matthew picture Ron Woodroof in that vision of Heaven, sharing that tender moment of glory with dad?
Who knows. I don’t know Matthew personally. Perhaps he does think Ron is up there, too. And perhaps he didn’t mention AIDS in his speeches for fear of offending anyone with a clumsy comment about HIV/AIDS? He has a famously loose style- so maybe we should be thanking him instead of ridiculing him for his choice of words…
I, for one, am not mad at McConaughey. He rescued a dead script from obscurity and breathed life into the performance. An actor mentioning AIDS out of obligation at an award’s ceremony might give us, those living with the virus, a good feeling inside. But I believe it does very little to educate those in the dark or get them truly interested in the cause. Where an actor has true strength is in the artistry of their craft- and in choosing the role of someone living with AIDS, McConaughey took a risk and it paid off for him professionally. He did his job.
So kudos to Matthew and Jared for going out on a limb and attaching themselves to Dallas Buyers Club. Just because they portrayed people living with AIDS, I don’t expected either of them to emerge from their roles as, say, an activist like Peter Staley of How To Survive a Plague. In fact, after the Golden Globes speech fiasco, Peter himself said: “I’m just happy Hollywood has made an AIDS film again. The crisis is far from over, so we still need reminding. And I hope Matthew McConaughey wins an Oscar.”
Labtest Contest X: Win Body Counts By Sean Strub
February 21, 2014
The Labtest Contest is back! And the grand prize has never been better- guess closest to my t-cell count and win a signed copy of Sean Strub’s incredible new book, Body Counts! The rules are posted below… be sure to follow them and good luck!
Shawn’s Guess: 422
Shawn’s Doctor’s Guess: 670
March-July 2010: Charles Oliff (guess: 567 actual count: 565)
July-December 2010: Aimee Lee (guess: 516 actual: 511)
December 2010- March 2011: “Satan” (guess: 666 actual: 662)
March-July 2011: Sharon Paul (guess:
520 actual: 508)
August-January 2012: Justin Starkenburg (guess: 570 actual count: 579)
February- June: Bob Geise (guess: 595 actual count: 590)
July-September: Sahara Frog (guess: 515 actual count: 512)
September-January 2014: Scott Anderson (guess: 620 actual count: 620)
February-October: Mary (guess: actual count:585 actual count: 583)
NOVEMBER RESULTS: 538 (No Contest)
1. You have to post your guess (between 400 and 700 t-cells) on my Poz blog Comments section
2. Relatives are allowed to guess! Bribes accepted!
3. Closest guess wins- if it’s a tie, the closest guess that DID NOT go over the actual count wins.
4. One vote/guess per person. Must have a valid email address.
5. Deadline is Friday, February 28, 2014 12:01 am EST
A Boy, A Virus and the Education of a Community
January 20, 2014
Recently I was contacted by Brian Bridgeforth, a fellow Waynesboro, VA native and the little brother of a longtime classmate and friend, Patti. (I believe Patti and I met in Kindergarten in 1980, and graduated together in 1993.) Brian works for the Waynesboro Heritage Foundation and invited me to write a guest blog entry about how my testing positive for HIV at age 11 affected our hometown.
(To read the full post, please visit The Waynesboro Heritage Foundation website!)
“Despite being born with the bleeding disorder, hemophilia, I enjoyed a
pretty typical childhood growing up in Waynesboro. I lived in a quaint
neighborhood, just a few skips down the sidewalk from my best friends.
Summers were spent swimming at my grandparents’ pool and many hours were
dedicated to the latest Atari games when I wasn’t outside pretending to
be Rambo in a game of war.
Yes, I am a child of the 1980s.
And one of the most impactful events of that decade was the emergence
of HIV/AIDS. It was during a time when there were gaping lapses in
blood safety standards. Due to my reliance on blood products for
treating my hemophilia I was at risk for HIV infection. There were
signs that my immune system was compromised in the 4th grade when half
of my body broke out in shingles. I did not receive a standard HIV test
until two years later in 1987. It was the spring of my 6th grade school
year and, aside from a bout with strep throat, it was one of my best
years until I failed that “pop quiz.”
After I tested positive for HIV my mom informed my teacher of the
results. My teacher had concerns about the risk of transmission to my
classmates, and when she spoke with her doctor it started a chain
reaction of fearful reactions that led to me being kicked out of school.
I wasn’t allowed back in class for the last four weeks of the school
(To read rest of the post, click HERE!)
Body Counts by Sean Strub
January 14, 2014
Sean Strub’s memoir, Body Counts, hit stores yesterday, and Gwenn and I were fortunate enough to get to our local bookstore just in time to nab the last three copies: one for us, one for my mom (who is a huge fan) and one for a future Labtest Contest prize.
But, don’t wait around for me to get labwork done in March for a chance to win this book, if you have any interest in the history of the gay community, the politics of sex and the realities of living with HIV- you’ve gotta get this book. Click on Sean’s face to read an excerpt of Body Counts in the latest issue of Poz.
Sean has been one of the most influential people in my life as a positoid. Without him, I really have no idea what I’d be doing right now. In 1996, after nearly a decade of living with HIV, I decided to speak out about being positive for the first time; I was 20, still living with my parents in Waynesboro, Virginia, and had just put up a website chronicling my thoughts on living with HIV. My doctor fed me a few issues of Poz Magazine and I was stunned that a magazine solely about HIV existed. I poured through its pages and loved what I read. I sent a fan letter to the editor-in-chief, Sean, and shared where I was at in my own journey with HIV.
A month or so later, I was watching wrestling and the phone rang. “Shawn, telephone!” My dad/secretary called out through my bedroom door. My beloved Ric Flair had just lost his World Title; I was bummed but took the call anyway. It was Sean. He invited me to NYC to be interviewed for the magazine and shortly thereafter I started writing my Positoid column.
When I learned that my original godparents had broken ties with my family in the 1980s after my diagnosis because their church said AIDS was God’s punishment against gay people, I asked Sean and Steve Schalchlin (another beloved mentor) to be my surrogate Godparents. They both readily accepted.
All of that personal history and admiration aside, it was hard to tear myself from Body Counts to post this blog- it really is an incredible book and an honest, forthcoming account from someone who has a truly unique set of experiences to draw from.
HIV “Cure” in Miracle Water
January 12, 2014
The word “cure” is getting thrown around a lot these days. There is a lot of promising research taking place and I am in hopeful place that in a decade’s time (give or take) I’ll be living a life free of HIV… or, at the very least, a life free of the daily routine of taking HIV medications.
Science will ultimately prevail.
But in the meantime, there are charlatans who claim they have the cure right now. The other night I was watching TV at the ungodly hour of 4 am, which I guess is appropriate considering the fella whom I happened upon.
Peter Popoff. Apparently he’s been at it for three decades and was exposed in the 1980s as a fraud, yet here he is today making millions of dollars offering people magical debt cures and miracle water that can cure HIV and just about any other medical condition you may have. Here’s the HIV part of the infomercial, forgive the poor quality of the video which was recorded from my phone.
It’s incredible that- for the right price- someone can run an ad like this. It preys on the gullible and the desperate and could have devastating consequences. If there is a God and there is a Hell, I think there’s a special place in the latter for people like Peter “Fuckoff” Popoff.
Operation AIDS Elves
December 19, 2013
And that’s how Operation AIDS Elves was born.
It’s a simple, fun way to spread some HIV/AIDS awareness during the craziness that is the holiday season… so, if you have a few extra red ribbons lying around, put them to good use! Here’s my friend and all-around good positoid, Rob Quinn, working his AIDS elf magic during a visit to NYC. And that’s me sneaking a ribbon onto a tree at the coffee shop and one onto the tree on the downtown mall.