Winnipeg man alive 30 years after HIV diagnosis

Jim Kane's dentist suggested he get tested for HIV in the 1980s, after he noticed thrush — a precursor to immune suppression — in his throat.

Kane was 32 when he found out he had HIV.

"I was shocked," he said. "Being diagnosed at that time was basically a death sentence.

"That's not the reality today."

Kane, now a community activist who has lost many friends to AIDS, is grateful to be alive 30 years later to mark World AIDS Day on Tuesday.

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Kane knows how he got the disease — he blossomed in the sexual revolution of the 1970s, he said. He and many of his friends didn't know about HIV at the time. A lot of people, he believes, carried the virus for a decade before it started surfacing in doctors' offices.

Facing the stigma

"There was a lot of shame attached to it. I believe it was 1987, and the panic and fear gripped Winnipeg at the time. Some people thought the entire high-risk population should be quarantined because they believed HIV could be transmitted by mosquitos," he said. "It was a very scary time."

Kane, who was convinced he was going to die, joined a peer support group of 26 people. Today only four or five of them are still alive, he said.

His work at CN Rail became a coping mechanism and a welcome distraction. He never got sick to the point of having to go on disability, but he was hospitalized for a few weeks, then returned to work.

CN transferred him out of Winnipeg in 1995. When he retired and moved back, many of his friends were no longer alive. 

"I can tell you, there was a ghost around every corner. I would go to a restaurant and remember being there with a friend who had died. I knew I had to deal with survivor guilt, why I was still alive and they weren't. Once again, it was the peer support group and community health agencies that helped me cope with this," said Kane. 

Kane credits drugs and attitude for survival

Going on clinical trials for new drugs and a treatment regime with AZT worked for Kane, he said, but he never knew which drugs were going to work and what the side-effects would be. Everyone in treatment at the time was a human guinea pig, he said — they all wanted to be part of the experiment to find a cure.

Kane jokingly credits his heritage as part of the reason for his survival. 

"I will say it's the luck of the Irish, too. I consider myself one of the lucky ones. People tolerated drugs differently. Some had a higher tolerance," he said. 

Diagnosis changed his path

Kane said in the 1980s, he was a very self-absorbed person. The diagnosis made him look at life differently.

"I had an opportunity to look at life through a different lens. It was less about me. I became a community activist. In the beginning it was about staying alive. In the end, it was about giving back to community," he said.

Today, Kane is chair of the board at Nine Circles, a community health clinic in Winnipeg that offers outreach services to people living with HIV and other blood-borne pathogens. He is also on the board of directors of the Canadian AIDS Society. 

Grateful for life

Kane is filled with gratitude and at the same time, disbelief. 

"It's unbelievable I am still alive. I never thought it was possible. When I was diagnosed, I was planning my life in a two-year cycle, not 20 years. When I was 30, I thought I would live forever. When I was 32, I thought I was dying. I had to learn this through adversity," he said.

A lot of people are still living with AIDS, but treatments now allow people to live healthy productive lives, he said. People can now get results the day they are tested, while Kane had to wait two weeks for his HIV-positive diagnosis.

He doesn't blame actor Charlie Sheen for keeping his diagnosis under wraps for years.

"Stigma is still a big thing. I can totally understand it. There is still a lot of shame and discrimination attached to this disease, and now there is even criminal liability — people being prosecuted for knowingly spreading it," he said.

The fear of prosecution may also be deterring people from getting tested, said Kane, who believes there are still many people who don't want to know because they are afraid they will be treated like a social leper.

And he says there is a barrier for some who need treatment in Manitoba. While the expensive drugs are paid for by Manitoba Health, patients still have to pay a deductible. He knows of cases where people don't have the cash for the deductible and postpone treatment. There are provinces where the drugs are free without a deductible, and Kane would like to see that available here.

Open house

Nine Circles is holding an open house from 10 a.m. until noon on Tuesday. People can come in and get tested, Kane said.

The latest statistics say 25 per cent of Canadians who have HIV don't know it, Kane said. Early diagnosis is key to reducing rates of HIV transmission and improving a person's outcome, he said.

Nine Circles and the Manitoba HIV program recommend people make December the month to be tested for HIV, especially if they are sexually active.