He may be a medical miracle, but his doc couldn’t care less
If an undetectable viral load is the Holy Grail of HIV treatment, imagine my head trip when my doc tells me that I’ve achieved that—without ever having taken medication. Yep, believe it. When she hits me with the news, I am purple-hazed like Jimi Hendrix. (Excuse me while I kiss the sky.) I have already begun setting my watch to clock my 15 minutes of fame, when the doc wrecks my groove. She doesn’t understand why the virus is gone, she says, but the minute it rebounds (as far as I know, it has never exceeded 8,000 copies anyway—and with 700 CD4 cells I’m thinking I’m doing fine), she will put me on combo therapy.
Wait a sec. Isn’t she the least bit amazed? Shouldn’t she book me on Oprah? Puh-leeze. Not a chance. And then she informs me that I won’t even get to double my pleasure by taking an ultrasensitive viral load test to confirm these great results. Those tests are the Moët assay to my Miller Genuine Draft health coverage that labels you undetectable when you may have up to 400 copies of the virus in your blood. The doc breaks it down to me: The free clinic where we are sitting is only free to an extent, even in “distinguished cases” like mine.
Damn, that’s tight.
Thanks to an overburdened health care system and an apathetic doctor, it seems like my 15 minutes of fame are over before they began. Never mind that I could possibly hold the key to natural immunity from AIDS. Whatever the case, Doc ain’t even trying to hear my bubbly enthusiasm about my results. In fact, my questions are working her last nerve. She has other patients to see. Such pestering about what she considers merely a scientific oddity is, well, disruptive. Haven’t I learned, she silently communicates, that in the world of public health, you take what advice and treatment you can get, and you don’t ask questions.
She’s right—I should have learned by now. After all, this isn’t my first journey into the belly of the public health care beast. Back in 1992—another time when I had no insurance—I made an attempt to address my health concerns at a packed Chicago facility after two years of being shaken and stirred by my HIV diagnosis. I tried to pull myself together for my doctor’s visit—scheduled months in advance—by reading booklets about AIDS from the local health department. Most of the information was about as easy to digest as a pot of cold cheese grits.
On the day of my visit, I packed a lunch. It was a good thing, too, because several hours after I arrived, I was still waiting to be seen. When my number finally came up, a nurse trying to draw blood jabbed me in the arm with several needles, then a doctor whisked by and presented me with a poorly photocopied timeline charting the course of HIV and my imminent death. Nothing else was explained. I wonder if any of the lab coat–sporting androids even saw me sitting there, or if they were too busy filling out my chart to notice. I left the facility even more upset than when I arrived. I didn’t see a doctor for another four years.
Fast-forward to 1999: The face of public health is no less unkind. Sure, now I’ve got access to all the latest medications through AIDS drug assistance programs, but the system itself is still as depressing as ever. That’s all I can think about now as I sink down in my chair after hearing the best news of my life. Doc cocks a goodbye smirk and pulls the next patient’s chart, and I’m kicked to the curb. As I head for the door, I wonder if I’m just another nappy head in a sea of nappy heads that flood the system.
Maybe that’s why, homeward bound on the subway, I feel railroaded. I’m trying to make sense of everything that just happened. I’m happy and confused. Up and down. Weighing my treatment options, I keep coming up short. I could switch clinics—which would hardly solve my problem—complain or avoid medical care altogether, like my ex. But for now I don’t want to make a decision. Every stop on this jolting, screeching subway ride puts me further from the chaos of the clinic, from all the mechanics that make me ill. I feel almost human again. And I’m not sure if I’ll ride the train back that way again.