From the day I was diagnosed with HIV in 1996, my fantasy of living to be a grandmother has boiled down to a race of science against time. In the mid-’90s, we had far fewer treatment options and much less hope of survival.
My first doctor prescribed AZT (Ritonavir) monotherapy and said it might buy me some time until they came up with something better. He made me feel as if I had swallowed a hand grenade and that AZT was gingerly holding the pin until researchers found a way to stop my viral load from exploding.
I remember the first day I took AZT. Thinking I had no choice, I faced my fears of taking an experimental drug that had been fast tracked toward FDA approval (did we really know if it was safe?). I endured various side effects and tried not to think about how they might affect my long-term health and my dream of becoming a grandmother. Meanwhile, my loved ones offered up alternative treatments (including holy dirt from the floor of Santuario de Chimayó, a New Mexican shrine near Taos) to help me survive.
While I was being acupunctured, herb wrapped and shamanically healed, protease inhibitors were approved, and my second doctor put me on combo HAART (highly active anti-retroviral therapy). He told me that I was now living with a manageable chronic illness as opposed to a terminal disease. The pin was still in the grenade, for the time being.
The first time I took my combo HAART, I nearly gagged—both on the medicine it-self and the bitter reality that I might have to swallow handfuls of pills for the rest of my life. Sure, there were side effects, but the alternative wasn’t pretty (or so I was constantly told). What was a little GI discomfort, anemia, peripheral neuropathy, depression, inability to sleep and lipoatrophy compared to death?
It’s strange to have come from a time of almost no hope (and planning my own funeral) to a time when my doctor and I can discuss the validity of choices I’ve made—and those to come. During my last visit, I asked him whether at only 115 lbs., I should take the same dose of HAART as men who weigh 265 lbs., and I asked whether I should have started my meds so soon in the first place. (After all, I took a high dose of a drug that I knew to be toxic, despite the fact that the only thing wrong with me was that HIV had been detected in my bloodstream.)
Of course, I’m glad that we’ve come this far in terms of treatment since the early days of the epidemic (though I often feel twinges of survivor guilt when I think of the thousands who have died of AIDS). It’s a huge relief to feel that if my viral load explodes I might still find ways to contain it. Even for those with multiple-resistant virus, there are new treatments just months away from approval.
Whenever I feel like pitching my pills out the window as I drive down the turnpike, I remember to appreciate having options for medical care, imperfect as they may be. Conversely, I am not just going to take my medicine and be quiet. I think we must demand better solutions to our health needs. Keeping us alive, at great physical, emotional and financial expense is not the end goal. The goal is still the cure.
It worries me that aggressively prescribing existing meds to everyone with the virus is seen by some as an HIV-prevention strategy, because the lower the viral load, the less infectious a person is likely to be. I wonder, “Am I on meds to protect my own health? Or am I on meds to protect the health of the HIV negative majority? Is my quality of life being compromised for the greater (public health) good?”
I am grateful, but wary. And I am holding on tight to my little baggie of sacred dirt. Just in case.