Cruising with Lazarus
Testing Positive: To Panic, or Not to Panic?
Sure, there are people living long, healthy lives with HIV. Some have been positive since the 1980s, even before the virus was named. I meet them occasionally. Never taken medications; no opportunistic infections. Still working full time. You know who you are. There's even a medical term for you: long-term nonprogressors. Envious? You bet I am. To live with HIV for nearly a quarter of a century and not get sick ... or go crazy ... I hate you. Nothing personal. I don't know what your HIV is like, but mine is a mean, mutating, relentlessly versatile bastard foe -- like having Freddy, Jason and Donald Trump all riding shotgun. See, I was one of those guys who got infected and then progressed to AIDS in, like, four years, despite the positive attitude, lifestyle changes and a personal mantra: I will not get sick.
Getting sick. People still get sick. Combination therapy fails. Oh, it's not widely reported -- the American media is all over barebacking and sex on the down low and that so-called "new" HIV strain, but couldn't care less about the HIV-positive folks who can't afford the drugs, can't take them successfully or never achieve the magic undetectable goal. Despite scrupulous adherence to numerous antiviral cocktails, one of my best friends has never -- never -- gone undetectable. Where's the press conference with alarmed public health officials announcing to the world that my friend's treatment failure should be a wake-up call?
How did you feel last February when New York City Health Commissioner Thomas Freiden told the world about a "new" strain of HIV that's resistant to three of the four classes of antiviral drugs and progresses swiftly to AIDS? Have you, like me, become so weary of shoddy AIDS journalism and exaggerated announcements by publicity-sucking public health whores that you are now automatically skeptical of any HIV reports by mainstream media? Is it even remotely surprising that, within a month of the arm-flapping about a new strain of HIV, scientists are now calling it rare and suggesting that one case simply does not warrant a panic?
Speaking of panic ... did you catch the news about Andy Bell, lead singer of my favorite European techno-pop band Erasure? Last December, Bell announced on his band's Web site -- how very new millennium of him -- that he's been HIV positive for over six years. "Being HIV [positive] does not mean that you have AIDS," Bell wrote to fans. "My life expectancy should be the same as anyone else's, so there is no need to panic." Whom are you trying to convince, Andy? I guess it would be terribly uncool of Andy Bell to freak out, even a little bit, publicly. But it's odd, and frustratingly ironic, that Bell, writer of some of the most emotionally overwrought pop songs of the last twenty years, would make such a bland statement about living with HIV. Erasure's biggest 1980s hit was called "A Little Respect." Honestly, I have a little less respect for Bell these days because I think he's just pretending HIV is no big deal -- and this attitude is starting to piss me off considerably.
I'm also pissed off at pharmaceutical companies that continue to advertise their HIV medications in aggressively insulting and preposterous ways. Recent issues of POZ, Out and HIV Plus magazines carried full-page, talking ads for Bristol-Myers Squibb's protease inhibitor Reyataz®. Thanks to a microchip and speaker glued between pages, readers open the glossy four-page ad and hear a cell phone ring, then a carefree male voice gushes, "Hey, hey, we're at the beach! Catch ya later!" Across the page, two guys are playing backgammon in the dunes. The ad's happy-go-lucky tone suggests one thing: Hot young gay guys don't need to worry so much about getting HIV because they can just go to the beach and pop some pills. In other words, HIV is no big deal, nothing to panic about.
I meet far too many hot young newly diagnosed gay guys these days. Some seem a little too casual, almost dismissive about their HIV. Scared? Nope, doing just fine here. They claim, repeatedly, to be totally okay with testing positive. Some of them are so unnaturally okay with it that I'm tempted to slap them hard. But listen long enough and something real and human always slips through a crack in the faked complacency. One told me he just didn't want to end up looking like all those older positive guys with sunken cheeks, veiny legs and shapeless butts. Well, dude, you might end up exactly like that. But even though your HIV fears are tied to your vanity, it doesn't make them any less legitimate. So go ahead, freak out. Cry. And do me a favor: try really hard not to give this godforsaken virus to anyone else.
I've got some of that sunken cheek thing going on myself -- a slightly gaunt look that makes me feel like an extra in a low-budget horror movie -- and I'd give anything to have my face back ... and my ass ... especially my ass. So I attended a forum on SculptraTM, the new injectable filler for people with facial lipoatrophy. A couple of treatments, dozens of needle jabs to the face -- it's a big needle -- and with a little luck, you might look something like the person you were before you started taking the meds ... that you're still taking. Watching the demonstration on a live, HIV-positive model, I knew it would take a dangerous amount of Xanax to get me through that procedure. And my heart sank a little knowing that my next twelve years with HIV will surely include innumerable meds, more side effects and some kind of extreme makeover.
Panic. Don't panic. HIV is a big deal. HIV is no big deal. We seem to be getting a lot of mixed messages about the virus these days. How are we supposed to feel about it?
Personally, I'm annoyed with public health officials who make melodramatic, premature public disclosures about HIV, especially when it looks like they're just exploiting any new development to frighten people into practicing safer sex or quit having it at all. I'm disappointed that our government is doing less and less in terms of HIV prevention and education, having all but replaced the two with vague testing initiatives and recklessly inept abstinence programs that have no proven impact whatsoever on sexually active teens or adults. Any celebrity who suggests that HIV will have no impact on their life expectancy bewilders me -- especially when I can count a dozen AIDS-related deaths of friends and acquaintances under the age of 55 in the last four years. And I'm outraged that pharmaceutical companies continue to promote their HIV drugs with the kind of glib tenacity typically associated with cell phone and soft drink advertising.
Cancer is still scary, right? It's okay to freak a little, shed some tears and solicit prayers when it's about the Big C. Well, HIV is still scary, too -- and not because a bunch of over-the-top public health drama queens tell us so. We know the stigma is still around. We know the treatments are frequently toxic, prohibitively expensive and not a cure. We know about the side effects -- diarrhea, diabetes, the humps, flat asses, ballooning bellies and sunken cheeks. We know about the rejection -- from employers and families and lovers. In our hearts, we know that HIV is still a big deal. No matter how chronic but manageable all those folks who don't have the virus keep telling us it is, HIV is the same hateful, killer virus it's always been, and we're not doing anyone any favors by pretending it's not.
David Salyer is an HIV-positive journalist, educator and activist living in Atlanta, Georgia. He leads safer-sex presentations for men and has facilitated workshops for people infected or affected by HIV since 1994. Reach him by e-mail at firstname.lastname@example.org.
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.