SURVIVING Two LongTerm Healthy HIV-Positive Men Defy Medical Beliefs

By Lisa LaFlamme

CTV Television (Canada) 17 Aug. 1999

GUESTS: Avis Favaro, CTV News Medical Correspondent; William Gilpin, LongTerm HIV Survivor; Adam Shane, LongTerm HIV Survivor; Carl Strygg, Health Education AIDS Liaison [video excerpt]; Dr.Philip Berger, St. Michael's Hospital [video excerpt]

LAFLAMME: Well, some of the people infected with HIV, the virus linked to AIDS, are defying medical wisdom and the odds. They're thriving without using any medication. And their success has triggered a heated debate. CTV's medical correspondent Avis Favaro has that story. [taped segment begins]

FAVARO: These men are called "thrivers". Both have HIV but both do not take antiHIV drugs. Yet, William Gilpin has been healthy for almost 14 years since diagnosis. Adam Shane has been fine for almost 17 years.

GILPIN: Cases like mine and Adam's need to be studied very closely. Why is it that I am in top health? I'm supposed to be at death's door.

FAVARO: They're among a small but increasingly vocal group of HIV infected people who are living longer using healthy diets, exercise and optimism but not medications.

SHANE: I felt sick within the first two weeks.

FAVARO: Adam took powerful antiHIV drugs for a year but couldn't tolerate the side effects the fatigue and muscle wasting. So he quit.

SHANE: Everything was fine after that. I felt a lot better, I had a lot of energy, I didn't have the fatigue. And I felt good about myself.

FAVARO: Some of the more radical HIV support groups say they wonder if the drugs aren't more toxic than the disease itself and want more patients to have the choice to opt out of treatment.

STRYGG: It's not about saying don't take HIV drugs, but it's about saying you don't have to if you don't want to.

FAVARO: But AIDS specialists say the drugs are indisputably beneficial.

BERGER: We used to see 20 to 30 people dying a year. There's been one death in the last three years in my practice.

FAVARO: And that stunning survival rate, according to Dr. Berger, is directly due to drugs like AZT and the newer protease inhibitors. They have side effects but have restored many patients to good health.

BERGER: Most responsible, informed people will accept the disadvantages in exchange for the tremendous benefits the biggest one of living longer and living healthier.

GILPIN: I'm gambling, I suppose. But I refuse to accept that HIV is a lifethreatening condition.

FAVARO: These two men say that doctors shouldn't underestimate the power of hope and lifestyle in battling HIV infection. And they're testing this risky theory on themselves. [taped segment ends]

LAFLAMME: And William and Adam join me now for more on their fascinating stories.

William, I want to ask you first: you say you don't think that it is a lifethreatening illness and yet, you know, the medical research shows that there is a link to AIDS and that there's countless deaths because of it. Why do you think you have beaten the odds?

GILPIN: It's a mystery. I'm just very keen on getting on with my life and making the very best of whatever time I have, whether it's another 75 years or another ten years. And I've had no reason to believe that I am sick. So I just keep chugging along and feeling in very good condition.

LAFLAMME: Has it always been this way?

GILPIN: Yes.

LAFLAMME: Take us back to the initial diagnosis.

GILPIN: February 6, 1986. Then I was in very good health as well. My doctor did a routine blood test and he said "You're HIV positive". And I was I guess not terribly surprised. I was very depressed about it. I had just turned 27.

And six months came and went and I was still alive. I had no symptoms. And they said, "Oh, well, maybe it's another six months or another year." And so the many years have gone by but all along I felt compelled to keep it private, I couldn't talk about it to anybody. It was such a stigmatized condition. And also there were no treatments, this was preAZT, preprotease inhibitors and

LAFLAMME: But now all of those things do exist. And, Adam, I want to ask you: you did sort of take advantage of some of the medical advances. Why did you stop?

SHANE: Well, I was on the drugs because my CD4 count, which is a measure of immunesystem ability to fight infections, fell. And all the hype around the Vancouver conference. So I decided to start the drug therapy triplecombination therapy in the hopes of boosting my immune system.

But once I'd started in the first couple of weeks I was a little sicker than I had been. And then after about a year on the drugs I developed extended belly, my cheekbones sunk in, my arms started to waste and I didn't feel good about myself. And I decided that's enough, you know, regardless of what the medical establishment was saying. I'd been healthy for 13 or 14 years up until that point and then when I went on the drugs I got sicker and I said forget it, I don't want to do this.

And since then I've felt very healthy. I've not had any problems, my CD4 count may not be within the normal range but I feel healthy and I just have a positive

LAFLAMME: It's just amazing. But what do you say to other people who are perhaps being diagnosed today? Is it responsible for you to be sort of coming on and saying, "Listen, we survived without medication" when the doctors are saying, you know, take advantage of what exists to help you survive?

SHANE: I think each individual that has a new diagnosis needs to weigh the pros and cons themselves and to look at all the information that's available, to listen to other people, to talk to people that have been on the medication, people that are still on the medication, people that have stopped, their doctors et cetera so that they can form a balanced opinion. And whatever direction they choose to go, whether it's with the medication or without, like me, is the right decision. They can always change their mind at a later time or to start or stop the medication. And I think a balanced viewpoint and all the information is really important. That's what I did for myself.

LAFLAMME: William, if you became ill would you take the medication?

GILPIN: I'd be very apprehensive about taking the present drugs, the socalled protease inhibitors or drug cocktail. I think if I developed one of the illnesses associated with AIDS lymphoma or pneumonia I would hope that my doctor would be able to treat that one illness with conventional, tried treatments. I don't have faith that the current medications are right.

LAFLAMME: Well, I'd like to thank you both for joining us. Fascinating talking to you.