December #30 : Mary Fisher Gets Mad - by Interview by Manjula Martin

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Table of Contents

Wild Kingdom

Rx Marijuana

Gender Matters

The Fabulous One

Mailbox

S.O.S.

Resistance Gets a Wellcome

Name in Vain

Go Figure

Like Butt-ah

An Aye for an Eye

To Russia Without Love

The Odd Couple

Secondhand Dose

Law and Disorder

AIDS in 2003

Catholic Cleanup

Until the Cure

Say What--December 1997

Diana, Princess of Wales

Chaka Treatment

Bear Essentials

Brace Yourself

All That Jazz

Respect Your Elders!

Bill of Health

Nunz With Attitude

POZ Picks-December 1997

Don't Mess With Mama

All Yesterday's Parties

The Light Burns Out

Peace of My Heart

Swing Your Partner

Once Upon a Lazarus

The Grim Reefer

In Case of Emergency

A DJ Saved My Life

Sweetness and Blight

"The First Cure"

Breaks for the Aches

Fishing for Supplements

When HIV Drugs Fail

Mary Fisher Gets Mad

Music Is Medicine



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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December 1997

Mary Fisher Gets Mad

by Interview by Manjula Martin

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.



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