Some long-term HIV survivors are using optimism, not drugs, as a weapon
By Sharon Lem
The Toronto Sun 9 Aug. 1999
TORONTO - A radical-thinking group of long-term HIV survivors believe a healthy lifestyle and positive thinking are the best ways to combat the killer virus.
Called "thrivers," they're not convinced HIV leads to AIDS and studiously avoid the standard anti-HIV drugs and treatments now commonly used.
In fact, some claim the anti-HIV drugs make them worse and the side effects are indistinguishable from AIDS symptoms.
Although most health-care professionals warn the men are playing a deadly game, they believe they're happier and healthier following their renegade philosophy.
Adam Shane, 38, began thinking positively to boost his self-esteem.
William Gilpin, 40, took up a regular exercise routine and eating more nutritiously.
Duncan McLachlan, 39, started meditating and reading the Bible.
All three men have been diagnosed with HIV and are surviving without the standard drugs that help thousands of AIDS patients live longer.
Shane, Gilpin and McLachlan are members of the Toronto chapter of Health Education Aids Liaison group (HEAL), an international organization devoted to challenging the idea that HIV is the cause of AIDS.
HEAL, one of several AIDS dissent groups, claims 500 supporters in Toronto and Vancouver and 10,000 worldwide.
Rob Johnston, co-founder of Toronto's HEAL chapter, disagrees that an HIV diagnosis is a death sentence.
He started challenging the idea that HIV causes AIDS when he heard about Dr. Peter Duesberg, a distinguished virologist and AIDS researcher who does not think HIV is deadly.
Duesberg, a professor at the University of California at Berkeley, believes the link between HIV and AIDS has not been proven.
He said AIDS is the accumulated effect of previous infections, particularly venereal diseases, aggravated by drug abuse and other lifestyle factors that weaken the immune system.
"After studying Duesberg's work, I concluded that HIV doesn't cause AIDS and the reason I'm still healthy after 14 years is because I avoid taking any anti-HIV drugs," said Johnston, who recently returned from a 1,300-km cycling tour in southern Mexico.
"There are no long-term studies that show there's any clinical benefit in taking these anti-HIV drugs," he said.
Mainstream AIDS physicians, scientists and activists say thrivers are denying the indisputable evidence that HIV and AIDS are linked and anti-HIV drugs are beneficial.
Tim McCaskell, 48, of Toronto, knows a person can live a relatively normal life with HIV -- but for only so long.
McCaskell, head of AIDS Action Now, first noticed the symptoms of HIV in 1981. He lived a healthy lifestyle for the next 11 years without standard anti-HIV drugs.
"As in any disease, some people progress quickly and some don't," he said. "I was probably infected around 1980 but didn't start to fall apart until 1992, so for a long time my immune system was doing okay," McCaskell said.
"It was that way for a lot of people, and then I remember people started dying in droves, and taking vitamins and doing exercise didn't help keep them alive," said McCaskell, a black belt in karate.
"For people whose immune systems are going to decline, and if they don't take advantage of drug treatments available, they are putting themselves at needless risk of illness or death," he warned.
But long-term thrivers say their healthy lives are a testament to their new-found beliefs. Shane, who was infected with HIV in 1983, said he wasn't going to let the virus get the better of him.
When his partner died in 1987, Shane was overwhelmed with grief. He spent the next five years fighting an alcohol addiction.
"I had an alcohol problem, and after five years I decided at that point to get myself treated or else I'd die, and there was no way I was going to die like that," Shane said.
Shane briefly took anti-HIV drugs but started to believe these drugs were making him sick.
"The first time I'd ever felt sick living with this was a direct result of the medication and I decided to stop it after a year.
"Since then I've had no problems at all and everything in my body is back to normal. I don't go to the gym, but I have a dog and I walk him to the park every day," Shane said.
"I tell myself my body is healthy and I'm going to live a long and happy life at least once a day," he said.
Gilpin, a landscaper, was diagnosed with HIV in February 1986.
"When I was diagnosed, people were dropping like flies and there were no treatment drugs and the doctor gave me the bleak forecast that I had six months left to live," Gilpin said.
"I had to deny that I had a life-threatening illness because I didn't want people worrying about me and I didn't want to be pitied."
Gilpin said it was a burden to carry the secret for 12 years before informing his friends and family.
"I've always been very fond of optimism. I've always been a very optimistic and independent-thinking person and I think this is extremely critical for my well-being," Gilpin said.
"I feel great and I feel normal and, for whatever reason, I don't think HIV is a life-threatening disease -- and even if it is, I want to make the best of my life."
McLachlan, 39, a former public relations specialist in the music business, has been living with HIV since 1983.
"I thought about death a lot," he said. "I was very scared of dying and I decided I wanted to learn whatever I could," McLachlan said.
"I learned that as I actively pursued the things which I thought would help me live longer, like meditation, weight training and eating a low-fat, high-protein diet, I felt better."
He said it's important for people who are questioning HIV treatment to know there are people who are living successfully without medication.
"This is the most difficult thing I've ever had to deal with in my life and this is serious stuff. We're not talking about the flu, so this is very challenging and difficult and I'm not trying to minimize it or make light of it, but it's possible to live with HIV and not take the anti-HIV drugs," he said.
Medical experts warn it's normal for HIV-positive people to feel fine for some time without any medication.
"In the absence of any treatment, the medium for people to survive without treatment is 12 years," said Dr. Philip Berger, chief of family and community medicine at St. Michael's Hospital.
"After 12 years of HIV, 50% will die without any treatment," he said.
Since the combination therapy of protease inhibitors was introduced in 1992, the difference in HIV patients has been remarkable, Berger said.
Many AIDS patients have improved to the point that they are almost leading normal lives and death rates have dramatically declined, studies show.