The GOP's AIDS poster girl takes on toxic meds, prima-donna docs and sexist scientists
Mary Fisher is widely considered a distinguished diva of AIDS activism. This artist, mother of two sons (Max, 9, and Zachary, 7) and founder of the Family AIDS Network is known for her eloquent pleas for compassion toward PWAs. But now, the all-American-Republican-single-mom-living-with-AIDS is pissed off. Invited to give a commencement speech at Wayne State University Medical School in Detroit last June, Fisher was too ill to attend. So she sent the grads a letter, telling them a thing or two about toxic meds, prima-donna docs and sexist scientists. POZ catches up with Fisher to discuss the letter in light of her current frame of mind and state of health.
In your letter, you wrote: "It is not the AIDS virus, exactly, which has kept me away from you; it is the therapy we're employing to fight it. I'm wrestling with prescriptions that may save my life and with side effects of those prescriptions which make me wonder if life is worth saving. I am weary beyond imagination, frustrated to the point of rage, and discouraged. Mary Fisher is struggling to care about whether she lives or dies." You've also been quoted as saying, "The treatment is worse than the disease." How was this true for you, and how are you doing now?
I consider myself a very positive person. I'm fairly able to handle life as it comes to me. My sons and I don't dwell on AIDS in our house. But whenever you change meds it's a constant reminder-everything is medical, all day long, and it's depressing. The drugs were affecting my energy level. I couldn't leave home or stay too far away from a bathroom. I was often nauseous. The question I had when I wrote that was: What's more important? The quality of life you have, or the length of life you have if you're really sick and can't be with the people you love? Lately, I've been taking some medication for the depression. Some of the side effects have dwindled, others haven't. I feel better about accepting it, though.
What types of medication are you currently taking?
As a rule, I don't like to talk about the medication I'm on or what my labs are. My medication changes often and, being someone that women look up to, I don't want women to think that what I'm on is right for them, too. I will say that I'm on a protease inhibitor and some antiretrovirals.
What do you think of complementary therapies?
I don't think the jury's in on whether they work or not. If something works to improve your quality of life, then I support it. I do believe in medication, in taking your stress level down and taking things to make you feel good-whatever works for you.
You wrote that you've "visited far too many physicians in recent years who passed their finals but failed to keep learning...What such physicians cured was not my disease, but my confidence in doctors." What led you to say that?
I've had wonderful doctors, but I've also had doctors that I think need to go back to school or change their career, because they don't have people skills. Someone with AIDS doesn't need to be judged. They need a partnership. I ask my doctors a lot of questions. I don't expect them to give me all the answers, but I expect them to say, "Let me try to find out."
You also stated that "it's hard not to grow angry at the slow pace of research, especially for women."
Yes, I've been very angry. The medical establishment hasn't given enough attention to women's bodies. There are so many questions we need to ask about how the virus affects and is affected by things like menopause, or menstruation. We don't know what these drugs do to women. That's why I'm working with researchers to develop some drug studies specific to women (see "Gender Matters").
How have your personal difficulties with the drugs influenced your work?
I try to get people tested, both to get them into the medical system to prolong their life, and so they don't unknowingly pass the disease on. But this is where my own trouble with side effects comes into play: How do I tell a young person, "Come into the system. You don't feel bad now, but let's get you on medication, and you'll really feel horrible"? Everyone's saying these [protease inhibitors] are the cure, but it's just not that simple.