17 years ago, anti-viral AIDS drugs gave David Hoe, 70, a new lease on life,
David Hoe was diagnosed with HIV in 1988. He was within days of death in 1996 when new drugs pulled him back from the brink. Now 70, Hoe is alive to tell the tale to a new generation that has lost the fear factor, JOANNE LAUCIUS writes.
David Hoe calls it “the Lazarus thing.” In 1996, he was almost dead. Diagnosed with HIV in 1988 — he believes he was infected in 1984 — Hoe counted on his “caring circle” for almost 30 friends for every need. He had put all of his affairs in order and was unable to walk when he started to take the newly introduced protease inhibitors.
“They worked within seconds,” says Hoe.
Some 17 years later, the drugs that signalled an optimistic new era for HIV-positive patients are still working for Hoe. He celebrated his 70th birthday in June and is one of the oldest HIV-positive men in Ottawa.
“The virus that used to kill people is now managed,” says Dr. Mark Wainberg, director of the McGill University AIDS Centre at the Montreal Jewish General Hospital.
While life expectancy can be diminished because the drugs bring an increased risk of heart attack and cancer, some HIV-positive people are now living into their 80s, says Wainberg. It’s time to think both about the issues around treating older patients as well as prevention for a new generation that no longer equates HIV with a death sentence.
Prevention efforts now face a new challenge — and partly its because of people like him, says Hoe, who is now a life coach and president of the Ontario HIV Treatment Network.
“A lot of people think it has been cured. But the infection rate keeps going up,” he says.
“We have a generation that thinks there is no need to worry.”
The story of the last 30 years of his life is almost a historical perspective at this point, says Hoe.
British-born, he arrived in Canada in 1972 and worked as director of social services in Iqaluit before moving to Montreal. Hoe was recruited to head the AIDS Committee of Ottawa in 1988, about the same time the first of many friends died of AIDS.
“Everyone around me was dying,” he says.
The AIDS epidemic started out slowly. It was perceived as something geographically isolated in New York and San Francisco, and affecting mostly hemophiliacs, heroin users and gay men.
“If the government had given a warning that there was a dangerous virus in the gay community, it’s likely I wouldn’t have been infected,” he says.
It was a truly scary time. Doctors and dentists declined to treat AIDS patients and funeral directors wouldn’t bury them, Hoe recalls.
By the time of his near death in 1996 Hoe was a senior federal policy adviser on AIDS and public health. The new drugs were so effective he was able to return to work full-time within nine months.
“There are a bunch of us now in our golden years,” he says. “We were brought back from the brink. Because HIV was such a killer, only those who made it to 1996 were the ones who made it through.”
In Canada, there are 71,300 people who are HIV-positive, an 11-per-cent increase from 2008, says Alex Kruger, a spokeswoman for the Canadian Foundation for AIDS Research.
Globally, HIV rates are decreasing to plateauing, but that’s not true of Canada. The reasons are unclear.
“It just got off the radar,” she says. “Canadians think it’s something that happens elsewhere in the world.”
In Ottawa, one or two people a week learn they are HIV-positive. A third of those with HIV don’t know it yet, says Hoe.
“One would think rationally that information would equal behaviour change. But we know that’s not true.”
The question of why HIV rates going up at all is an important one, says Wainberg. Every HIV infection prevented saves a lot of heartache and money.
“It seems obvious that a lot of people who are aware of risk are not taking steps.”
In a recent report on HIV and aging, the Canadian AIDS Society found that the proportion of older Canadians becoming HIV-positive has increased, rising from 10 per cent of all test reports in 1999 to 15 per cent in 2008.
The society pointed out that in high-income countries, access to antiretroviral therapy and other treatment options has improved the chances of living into old age.
“This fact may contribute to the increasing number of older Canadians living with HIV,” said the report.
Living with HIV is not without difficulties, says Wainberg.
Long-term survivors who took earlier generations of drugs suffer from the toxicities associated with those drugs, as well as effects that speed up aging, such as the bone demineralization that leads to broken bones.
Hoe has nervous system damage and suffers from pain in his legs because of medications he took before the anti-viral drugs.
“It overlaps with the symptoms of aging,” says Wainberg.
The Canadian AIDS Society notes that when it comes to HIV and aging, there are really four groups: those over 50 who have been HIVpositive for many years; those who have been recently infected and diagnosed; those who were infected years before but not diagnosed, and those over 50 who are at risk.
Hoe has thought about the role he plays in changing the future for gay youth.
He is part of the Canadian Foundation for AIDS Research’s “legacy” project, designed to build a community of donors to fund research aimed at revitalizing prevention for young gay men.
It’s important to build a community where it is safe to talk about the issues gay men face — and it has to be in the context of better relationships, he says.
“HIV has survived through three generations and it has to stop.”
As for the search for an ultimate cure, Hoe thinks the answer is more likely a combination of medication, awareness and managing decisionmaking.