"Medicine by headline" sucks. Take it from KS kisser Sean O. Strub
I love to kiss. I kiss my mom. I kiss the guy I'm dating. I kiss my sisters, friends, dogs. From polite pecks on the cheek to spit-swapping, tonsil-rattling tongue-tying, I love it all. That's why the news late last year that the herpes virus that causes Kaposi's sarcoma (KS), HHV-8, can be transmitted in saliva truly terrified me (see "Lip-Locked"). The information itself came as no surprise; many viruses, including HIV, can be detected in spit, at least in theory. But all the "Kissing Causes KS" headlines convulsed my stomach; they were like a flashback to 1985 when I was diagnosed and first felt all the force of the "Diseased Pariah" label.
Don't get me wrong: I'm all for scientific research -- and for giving HIVers access to the facts as fast and responsibly as possible. But in the flurry of KS coverage, an essential point was lost: No one with HHV-8 develops KS without a severely compromised immune system. And it was the usual "medicine by headline" sensationalism that lost it. The uninfected seem endlessly fascinated by the transmission risks HIVers pose. Plus, there was the almost prurient interest in the fact that something as deadly as cancer can be passed by something as loving as a kiss. Even the alliterative KS and kissing seemed made-to-order sinister.
Well, try getting someone to kiss you with a KS-covered face. In 1994, when I began sprouting those slashes of purple all over my body, I was convinced that everyone saw me as a kind of walking billboard for AIDS; the virus was literally popping out of my skin. I chose to make peace with the lesions instead of treating them cosmetically. I even did my best to wear them as a badge of honor, testimony to my confidence in the face of disfigurement. Feeling "sick" and having my body fail me I can deal with. But feeling "diseased" is a reaction to how others treat me, and harder to accept.
Well, the naked biological truth is, humans are a diseased species. We spend our lives giving and getting pathogens of all kinds. But after living with AIDS for more than half my life, I have come to believe that science's obsession with eliminating HIV and other pathogens from the body at the expense of strengthening the immune system to resist the damage they cause is deeply disturbed. True, it has led to HAART, but it has also legitimized fear-based HIV prevention and punitive public health policies whose logical conclusion is (call me crazy) the elimination of all who carry the virus. Instead we need to promote "sick" health care based on the premise that the immune system can coexist with its disease-causing infections (see "Here Comes the Cure," POZ, January 2001).
HIVers often speak of what an AIDS diagnosis forces us to learn: lessons of love and compassion, duty and service. As our bodies fail us, our minds often come to the rescue. This starts in small ways -- with the realization that you haven't thought about AIDS all morning, say, or when you feel a PWA's joy of having sex again. Gradually this survival experience builds on itself, refreshing hope, delivering purpose and bestowing acceptance -- if you let it. That's why sensationalism -- the cheap leap from valid research to hysterical journalism -- is so damaging: It robs us of our humanity.
Remember Gran Fury's "Kissing Doesn't Kill" city-bus poster campaign and the ACT UP kiss-ins of a decade ago? Those were attempts to challenge the general fear of casual transmission of HIV -- yet today 40 percent of Americans still think they can "get AIDS from kissing." Still, the new findings of high concentrations of HHV-8 in saliva and high rates of HHV-8 among HIV positive gay men do suggest a causal link. But until researchers learn a lot more, I'll remain haunted by ambiguities, both scientific and moral. Should I stop kissing my mom and start kissing only other HHV-8ers? Or chalk up this risk to the "price" everyone pays for intimacy? But one thing is certain: While I don't want to spread a potentially fatal virus to anyone, I can't survive without kissing.