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This article appeared in the Globe and Mail on November 15, 1997, as the first part of a three-part series entitled, "The New Epidemic: AIDS a generation later."
by Murray Campbell
The man with dirty brown hair and the gaunt look of someone who does not live well would seem to be the living denial of the spreading belief that the AIDS epidemic in Canada is on the wane.
He approaches the needle-exchange van parked in an alley behind Granville Street in downtown Vancouver, but he wants to make it clear that he does not need the clean syringes being offered. He used to do heroin, he said, but now he is on the substitute oral drug methadone.
It soon becomes clear, however, that
he desperately needs something else.
"I've got full-blown AIDS and I didn't even know I had HIV," he says in a Maritimes accent. "It scare you..., man."
The good news has been pouring in for more than a year now, the headlines telling of new drugs that are giving profound hope to men and women living with HIV and AIDS.
The impression the stories leave, that the deadly epidemic that has raged through Canada for more than 15 years has been subdued, is only partly true.
What has not been said very often until recently is that although the number of deaths from acquired immune deficiency syndrome is going down dramatically, there is also a surge in the number of people becoming infected with the virus that causes AIDS.
What's more alarming is that many, if not most, of the newly infected do not - perhaps even cannot - take advantage of the new drug therapies.
One national AIDS service organization believes that just half the estimated 40,000 people living with human immunodeficiency virus in Canada are taking advantage of treatment that use a powerful new generation of drugs called protease inhibitors.
At least 60 per cent of the HIV-infected drug addicts in Vancouver are not receiving any therapy.
Some, like the man on Granville Street, have so little contact with the health system that they do not realize they are infected until it is too late. Others refuse the drugs by choice, some face financial barriers and many lead lives of such dissolution that they cannot find the discipline needed to follow cumbersome drug programs involving dozens of pills every day.
The concern among AIDS service providers
and public-health officials is that it is the newly infected who
are least able to get access to the new drugs.
And the fear is that it is these same people - the poorest in Canada - who are shaping the epidemic and spreading it widely among a heterosexual population that has become comfortable with he idea that the AIDS epidemic does not concern them.
The new trend is alarming public-health officials, who had watched in recent years as both the number of new AIDS cases and deaths declined.
"We have to face the challenge that the epidemic is reappearing in Canada," said Donald Sutherland, who as director of Health Canada's Bureau of HIV/AIDS tracks the course of the epidemic. "We've got a lot of work to do, and we can't be complacent."
There had been quiet satisfaction that the safe-sex prevention messages of the past decade had been effective. But health officials are discovering that AIDS case statistics say more about where the HIV epidemic was a decade ago than where it is today. (It takes about 10 years on average, for HIV to develop into AIDS.)
The measure of complacency has been shattered in the past couple of years as new HIV infections have risen. As many as 5,000 new cases a year are being added in Canada, compared with 2,500 to 3,000 annually between 1989 and 1994. Health officials attribute almost all that increase to injection-drug users.
The disease that once mainly afflicted men who have sex with men is now cutting a swath through different groups. The data also suggest infection rates are increasing among heterosexual women and aboriginals.
These newly infected people are younger, too. The median age of infection is about 24 years, compared with about 30 a decade ago.
"We've made one step forward, but two steps back," said Steffanie Strathdee, an epidemiologist with the British Columbia Centre for Excellence in HIV/AIDS in Vancouver. "We've made important strides in the area of HIV treatment, but where we're really losing the battle is in respect to prevention."
Russell Armstrong, executive director of the Ottawa-based Canadian AIDS Society believes poverty is the characteristic that links those who are newly infected and that it is shaping the HIV epidemic in Canada.
Those living in poverty are at risk for HIV and for more rapid progression into AIDS, and those who become infected are often reduced to poverty as a consequence, Mr. Armstrong said.
"Not having access to adequate income, nutrition and housing, the consequences of which are problems with addiction, can put people at risk for HIV and can prevent them from choosing not to put themselves at risk," he said.
"The second point is that if you weren't poor before you got it, you definitely get poor afterward."
Right now, HIV is an express that is targeted to the poor," added Michael O'Shaughnessy, director of the B.C. Centre for Excellence. "That's where this virus is going."
In total, 15,101 AIDS cases in Canada have been reported to authorities since the epidemic began in the early 1980's. About 73 per cent or 11,406 of those afflicted have died, according to government figures, but the annual death toll is now just one-fifth what it was at its peak in 1993.
There have been about 54,000 cases of HIV infection, but the number is underestimated by at least 30 per cent because not all cases are reported, and some individuals do not know they have been infected until their health deteriorates.
In the early days of the epidemic --
the first case of AIDS was reported in Canada in 1979 and HIV
was isolated as the causative agent in 1983 -- the notion arose
that it affected only homosexuals, hemophiliacs and Haitians.
The myth was soon dispelled, but for the first decade the epidemic was identified with homosexuality. The most certain indication of that is the fact that AIDS has been the leading killer of men aged 25 to 44 in Vancouver, Toronto and Montreal.
But the epidemic has undergone a change
in recent years. Older gay men took heed of the safe-sex message;
but not everyone was paying attention.
In the early years of the epidemic women accounted for only 10 per cent of individuals testing positive for HIV, but by 1995, the percentage had doubled. Last year women accounted for 31 per cent of new HIV cases.
Women accounted for about 5.5 per cent
of total AIDS cases in Canada in the early years of the epidemic,
but the percentage is now nearly double that.
Most became infected through heterosexual transmission, though government figures indicate that one-quarter of the new female infections last year resulted from injection drug use. The two categories are not mutually exclusive; most female drug addicts support their habit to some degree by means of prostitution.
"These figures speak pretty much to a failure of prevention and awareness messages geared toward women," said Marcie Summers, executive director of Positive Women's Network in Vancouver. "I think the general public still tends to see it as a gay man's disease."
Ms. Summers estimated that 93 per cent of the women who use her group's services are living in poverty.
Just 4 per cent of AIDS cases reported
to Health Canada in the past 18 years are attributed to injection-drug
use, but this distorts the current situation because AIDS data
reflect patterns of HIV infection from 10 years earlier. In 1996,
for example, drug users accounted for 9 per cent of AIDS cases.
HIV rates, a more reliable indicator of where the epidemic is headed, show that needle users are being hit hard in certain cities, particularly Vancouver, where injectable cocaine has become fashionable.
In 1995, injection-drug use accounted
for 38 per cent of new positive HIV tests in British Columbia,
compared with just 9 per cent in earlier years.
Dr. Strathdee estimates there are two new cases every day among the approximately 8,000 injection drug users in Vancouver.
"This explosion just overtook all of the interventions that were in place," Dr. O'Shaughnessy said. "It just overwhelmed everything."
Just 240 AIDS cases have been reported
among aboriginals in Canada since the beginning of the epidemic,
but more recent data on HIV infection suggest the disease is running
rampant among natives both on and off reserves.
Information is sketchy, but Kevin Barlow, coordinator of the Canadian Aboriginal AIDS Network in Ottawa, suggests that 4 per cent of the country's native population is infected with HIV, compared with less than 2 per cent just four years ago. He worries that the rate will reach 12 per cent in a few years.
In British Columbia and Alberta, aboriginal people account for up to 26 per cent of newly diagnosed positive cases.
In Vancouver, a recent study found that one-third of the high-risk injection-drug users were aboriginal. Anecdotal evidence in downtown areas across the country suggests that as many as three-quarters of the clientele using needle exchanges or counselling services are natives.
"I would use the term 'raging epidemic,'" Mr. Barlow said of the growing HIV incidence among aboriginals.
The epidemic has also surfaced, surprisingly,
among young gay men, both those who live on the street and those
who have more comfortable lives.
The infection rate is nowhere near what it was in the 1980s, but men who have sex with men still account for 37 per cent of HIV diagnoses, and health officials say those infected are getting younger all the time.
A generation gap of sorts has arisen. Young gays are said to believe that HIV/AIDS is an old man's disease, and that it is all right to have unprotected sex -- "barebacking," it is called -- with a younger partner.
This, coupled with the normal youthful
sense of immortality and sex-education programs that are judged
to be inadequate, has meant there is fierce resistance among young
gay men to warnings about taking risks.
A recent Vancouver study of gay men between the ages of 18 and 30 years found that four in 10 engaged in unprotected anal sex.*
"It's almost as if the lessons learned by people who are now in their late 30s who got the disease in their 20s haven't been absorbed by the people who are in that age group now," said Gary Barber, head of the infectious diseases department at Ottawa General Hospital.
Dr. Sutherland added: "People are affected by what's in the news. They are basically hopeful that the epidemic is going to go away, and when there's the least sign of that, they want to believe in it."
The shifting demography of the Canadian epidemic reflects the experience elsewhere, particularly in the Third World, where HIV/AIDS is a disease of poverty and marginalization.
Poverty and poor health have always been linked in Canada as well, despite medicare, but the issue is more complicated because specific treatment of HIV is expensive and not always financed by public funds.
In British Columbia, where drugs are available free to anyone with HIV who meets certain medical guidelines, fewer than half of those infected are receiving treatment.
Rodney Kort, treatment coordinator for the Canadian AIDS Society, has identified several barriers that prevent new drug therapies form gaining more widespread acceptance.
The first is the treatment itself. Protease inhibitors, described by one user of them as "computer-generated poison," are a powerful new class of drugs that, in combination with older drugs, work to suppress the viral load in a person's body.
The conventional wisdom is that this antiretroviral treatment (HIV is in a group of viruses called retroviruses) should begin soon after diagnosis. "Hit early and hit hard," clinical scientists are fond of saying.
But such therapy produces unpleasant
side effects such as headaches, nausea, even kidney stones. Many
newly diagnosed individuals who are still feeling healthy are
wary about starting a treatment that seems worse than the disease.
In addition, taking 30 or more pills a day requires discipline and concentration. For example, some have to be taken with food and others without. One type of protease inhibitor must always be refrigerated, which reduces a person's mobility.
Many individuals using a cocktail of three drugs find that simply taking their medication is a full-time job.
The complexity of new drug therapies precludes all but the most stable of individuals from undertaking the process. It is unthinkable, for example, that someone injecting cocaine 20 times a day could ever manage to take the pills at prescribed times.
Stanley de Vlaming, who treats more that
100 HIV-positive drug addicts at his Gastown medical clinic in
Vancouver, said it is common for cocaine users to fix 15 to 20
times a day and to go up to a week without sleep.
"Can you imagine how dysfunctional a patient like that must be?" Dr. de Vlaming asked.
"I know of nobody who's stable enough to go on it," said John Turvey, executive director of Vancouver's Downtown Eastside Youth Activities Society.
"They're not included now [in combination therapy] and they won't be included in the future unless we can get the drug regimen down to a manageable one and stabilize the people so they can access it."
But the cost of drugs is the biggest barrier faced by people with HIV or AIDS.
The Liberal government has pledged to create a national pharmaceuticals plan, but has been criticized for not making it a high priority. Jim Wilson, when he was Ontario's health minister, called the pledge an election ploy.
A 1995 survey showed that four of every 10 people infected with HIV had access to a private, employer-sponsored health plan, but the changing profile of the epidemic has undoubtedly changed the picture. The newly infected typically have no private insurance to pay for the drug therapies that promise to extend life expectancy but cost up to $1,500 a month.
In addition, for those who work and have access to private health benefits, the high cost of HIV/AIDS drugs creates problems.
The chronic nature of HIV means that many individuals enjoy relatively good health punctuated by periods of illness that can be severe enough to require hospital stays. Those who have to quit work for a time and try to get private insurance upon re-entering the work force are likely to find that clauses dealing with "pre-existing conditions" work against them.
The pressure is on insurance companies to maintain their premiums for health coverage as they are hit with higher claims for so-called catastrophic drugs such as those used to treat HIV.
At the Canadian AIDS Society, which has a number of employees with HIV, drug claims are limited to $2,000 a year in order to keep premiums for health coverage affordable. The irony is lost on no one who works there.
"The cost of drugs slowly erodes that ability of all but the most wealthy to provide for their own treatment," the society concluded in a paper last year to a parliamentary subcommittee investigating the HIV/AIDS epidemic.
The organization has called on Ottawa to enact emergency measures in collaboration with provincial governments and private insurers to provide coverage for those considered "uninsurable."
Many people diagnosed with HIV quit their jobs and go on public assistance to qualify for provincial drug plans. A 1994 Toronto survey found, for example, that 17 of 22 patients with HIV/AIDS had left work and signed up for family benefits allowance because they could not afford the medication they required.
But provincial plans vary greatly across the country, and though they recently have become much more uniform in their coverage, they remain something of a patchwork. Not all HIV drugs or dietary supplements are covered by all provinces, and deductibles and prescriptions fees vary.
Many individuals with HIV have been frustrated by the public insurance system.
For example, Peter, an Ottawa man who was diagnosed with HIV in 1992, had to use his credit cards to pay for five months of treatment - more than $7,000 - before his enrollment in Ontario's income-based Trillium drug program became active. He earned enough money to be ineligible for welfare, but not enough to foot the drug bill himself.
At one point, with his credit cards at their limits and with no other funds available, he thought he would have to suspend his treatment or drop certain drugs and risk introducing a new strain of resistance to the infection.
He wrote more than a dozen letters to Trillium officials, but said he received no replies. "I was irate," he recalled. "Here I was, needing drugs to live, and they're not answering my calls or letters."
Philip Berger, a Toronto doctor who treats more than 150 patients with HIV, believes that accessibility has improved, but he nonetheless advises frustrated patients to go to the Trillium office and yell out that they are dying and need drugs.
"That expedites things," Dr. Berger said. "It works every time."
*Note from the Project Coordinator: This is actually an under-estimate. We found that just over half of our participants had engaged in some form of unprotected anal sex in the previous year.
For more information, contact:
Vanguard Project Coordinator
608 - 1081 Burrard Street
Vancouver, BC, Canada, V6Z 1Y6