Letting Someone Else Drive
Like many HIV community activists, I became involved after my own diagnosis. My work in the field has become my profession, training people with HIV to become community advocates and represent themselves and others with HIV on local advisory boards and planning groups. It's a privilege to talk to other people with HIV about the process of empowerment and how vital it is to both individual and community responses to such a devastating disease. It's work I love and believe in.
That makes it all the more confusing to consider my own role as a patient struggling to make decisions about my healthcare. I'm not sure how empowered I actually am when it comes to medical decisions, and my history with antiviral therapy bears that out. It's hard enough to sort through all the individual drugs, let alone the complicated regimens, contraindications, and possible side effects. The life and death import of these decisions has sometimes led me to avoid responsibility and adopt a close-your-eyes-and-aim-in-the-direction-of-the-dartboard strategy. Upon reflection, it's clear that I've most often relied on the advice of people that I saw as authority figures, for better or worse. Mostly for better, luckily.
I was diagnosed in 1990 when I was in my early twenties. By 1995, I was working in public policy at Gay Men's Health Crisis, and a treatment educator friend told me about the combination therapy trials being conducted by David Ho at the Aaron Diamond AIDS Research Center here in New York City. I was treatment naive, meaning that I had never taken any anti-HIV medication -- and I was certainly naive about treatment.
My T-cell counts had been slowly declining and were dipping below 500. I figured what the hell. There was excited buzz around the work Ho was doing, and I thought I'd be at the center of what was cutting edge in HIV. Frankly, that fed my ego and sense of myself as an in-the-know, sophisticated New York homo with HIV. I looked up to my treatment educator friend for his encyclopedic treatment knowledge and his commitment to educating people about their options. I viewed him as a mentor. I never considered myself a treatment wonk. I still don't. While every drug approved by the FDA was a victory for access and care, each also complicated things and increased my sense that it was all beyond me. On some level, I think I entered the trial to please my friend by following his advice. Not a very scientific motivation, but there it is. I think he was a good person to trust in that he was very well informed and had my best interests in mind. So my choice of him as a resource was well founded even if the decision to participate in the trial was based in part on emotional considerations.
I was in the trial for several months and experienced excellent clinical benefit, although I had to deal with difficult side effects, mostly diarrhea, which necessitated bringing clean underwear with me everywhere I went. I was "intermittently compliant," as the investigators reported at the International Conference on AIDS in Vancouver in the summer of 1996. Eventually, I was dropped from the trial. I felt like a bad patient, but also harbored resentment against the study doctors. I felt that their allegiance was more to the trial than to me as a patient. As with my treatment educator friend, they were renowned in their field and seemed appropriate persons to trust for medical advice, so I don't regret the trial experience. But the ignominy of being dropped still stings a little.
A few years later, having switched treatments a few times, I was seeing a new doctor at a clinic because I was unemployed and relying on my ADAP (AIDS Drug Assistance Program) coverage for primary care. New York State ADAP, then and for the present, provides primary care, a roster of medications, and home care if needed, but not hospital stays. The clinic doctor was nice, but I wasn't sure he'd know my name if I met him on the street. Advised to completely switch regimens, I was put on Ziagen, Sustiva, and maybe something else (I can't remember). I was a fool to make any treatment changes without insurance. Within a week, I had a severe allergic reaction to the Ziagen, puffed up like a balloon, and was in the hospital on steroids for three or four days. And I have the $8,000 medical bill to prove it.
I was mad at the doctor for not considering my lack of insurance in switching my treatment. And I was mad that he hadn't underscored the possibility of an allergic reaction. Maybe he did go over the possible side effects, but I don't remember that happening. I was furious with myself, too -- not for the allergic reaction, but for not making sure I was covered for hospitalization and for not clearly examining the drugs' side effect profiles and being alert for signs of a reaction. I had figured that I was an old pro at AIDS meds. I was wrong. I had taken several of them, but hadn't invested a lot in studying them.
I don't want to oversell the mea culpa aspect in describing my experience with HIV medications. My intention is to describe the impact of my emotions on taking medical advice and to validate, at least for myself, how overwhelming and scary dealing with treatment decisions can be. I've noticed in myself that there is a strong desire to sit back as a patient and let someone else drive. I pick adequate, even excellent people to advise me because I recognize that, emotionally, I'm easily overwhelmed by treatment issues. But I'm still uncomfortable with the idea that I'm evading taking control of medical decisions.
There's a sense that people with HIV should become super-consumers, know all about every aspect of HIV, and be rabid activists. That's a lot of pressure and a lot of responsibility. Beneath my behavior is a skewed belief that if I allow someone else to make the decisions for me, then I get to blame them if something goes wrong. That equation is what also troubles me. It's hard enough to take personal responsibility for contracting HIV and hard again to take responsibility for what happens to my body.
Of course, people with HIV aren't the only ones who struggle with issues of personal responsibility. Everyone who smokes cigarettes or eats fatty foods makes decisions that may negatively affect their health. For me, tolerating my impulse to let someone else drive my medical decision-making is the first step in acknowledging, and eventually challenging, my passivity as a patient.
Currently, I have the luxury of not needing too much advice, which is great. I was having a lot of trouble on Sustiva and went off everything in 2000. I've been able to maintain satisfactory T-cell and viral load counts since then without being on combination treatment. It's really nice not to be taking drugs. I figure I'll have to go back on some regimen eventually, and I know that my previous experiences will stand me in good stead. Experience is a powerful teacher, and I now know things to watch for, questions to ask, and more complex ways to analyze the advice I'm given and the regimens I'm considering.
I've been very lucky to be positive in the era when care has been revolutionized, at least in this country, by combination therapy. I'm lucky that I've had the opportunity to explore my impulse towards passivity in the face of a challenging and scary health condition. I continue to develop awareness of my own tendencies so that my actions can be less unconscious reactions and more considered choices. If I've learned anything during my time as an HIV educator, it's that becoming an advocate takes time and fortitude. It's a process, as they say. Little kids think throwing the blanket over their heads will protect them from the monster under the bed. Of course, HIV is a real monster, not an imaginary one, and I'm slowly learning to stare it in the face.
Christopher Murray is a member of ACRIA's Community Advisory Board.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.