Saturday, June 30, 2001
ANDRÉ PICARD
Public Health Reporter
The Globe and Mail
When Glenn Fash turned 30, he marked the occasion with a memorable bash, a flamboyant party with dozens of his closest friends. They danced, they drank and they cruised with the Bacchanalian abandon of the disco era.
A few weeks later, he fell ill - a fate shared by many in the gay community. By the time 40 candles adorned his cake, he was the only man at his earlier party who was still alive. AIDS had taken all the others, leaving Fash and his new circle of friends, all infected as well, shell-shocked and melancholy.
“I spent 10 years burying my friends,” he says, “and 10 more years just hanging on.”
But last year, when the Montreal teacher turned 50, it was party time again. Thanks to medical advances, many of the HIV-positive were not only still alive, they had, like him, also found love again. But they were all acutely aware that this might be the last fête.
In 1980, Fash and his friends were celebrating sexual liberation. In 1990, they were mourning and fearful. But, by 2000, they had adapted to life in a world with AIDS, all the while casting a weary eye to the future.
The history of his birthday celebrations sums up succinctly the history of HIV-AIDS in Canada: Initial disbelief giving way to despair and then some glimmers of hope, against an ever-present background of illness and death.
“I don't need to read about the epidemic in the newspaper. I've lived it,” Fash says. “It's been like one long horror movie - and it's not over yet.”
The numbers are mind-numbing. There's a growing impression that the danger has passed, but the disease is more devastating, more diverse and more complex to treat than ever. Around the world, it infects someone new every six seconds - almost 15,000 people a day - and, because of a stockpile of victims, kills one person every second.
Last year, Canada's infection rate actually went up for the first time since 1994, reaching 12 people a day. They typically include five men who have sex with men, three heterosexuals, three injection drug users and one aboriginal person. One in four is a woman.
After two decades of pitched battle with the world's greatest scientists, the virus is still winning. It has shattered the illusion that the developed world was safe from infectious disease. It has taken a big bite out of the world economy. It has altered the demography of the planet.
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HIV-AIDS has changed the way we love and, in many cases, the way we live. Yet, Canadians are largely indifferent. Safer sex messages have all but disappeared. Sex education in the schools is woeful. Proven prevention programs such as needle exchanges are losing their funding. Support groups are shutting down. When politicians talk about HIV-AIDS today, it is to say that immigrants should be tested, perpetuating the myth that the disease is someone else's.
Thus far, the epidemic has infected 54,000 people in Canada, killing 15,000 of them. Still, the federal government spends a mere $42.2-million on the scourge - the same as it did a decade ago. The cost of treatment is rising everywhere, but more than half the provinces and territories spend nothing at all on prevention.
HIV-AIDS is the most lethal infectious disease since the Black Plague swept across Europe in the 14th century - 4.7 million adults were infected last year plus 600,000 children. And yet the media pay it scant attention, except for a recent flurry of 20th-anniversary stories, perhaps because looking ahead is a little too grim.
So far, about 58 million people have been infected, yet epidemiologists believe that the epidemic is only at the halfway point. If it's left unchecked, the tally will be in the hundreds of millions. The disease already has shaved 40 years off the life expectancy in some African countries and will create 100 million orphans on the continent by 2010.
“There are moments in Africa where you feel you're standing in a graveyard where all around is nothing but death. . . . The whole continent feels under siege,” says Stephen Lewis, the Canadian recently appointed as the United Nations' special envoy in the fight against AIDS-HIV.
In comparison, Canada is relatively untouched, but even here the epidemic is having a profound impact. Last year alone, more than 4,200 people, an all-time high, were infected and there seems to be no respite in sight.
“Have we really thought about what it will be like to have 100,000 or even 200,000 Canadians living with HIV?” asks Sharon Baxter, executive director of the Canadian AIDS Society. “That's where we're going to be in a decade if we don't get serious about this disease.”
Glenn Fash fell horribly ill in the summer of 1980. The mysterious ailment inflamed his lymph nodes and sapped all the energy from his body - now recognized as classic signs of “seroconversion” illness, the onset of HIV.
The same thing was happening to hundreds, even thousands, of sexually adventurous men elsewhere. On June 5, 1980, Mortality and Morbidity Weekly, a publication of the U.S. Centers for Disease Control, carried a report from a Los Angeles physician noting a strange coincidence: five “previously healthy homosexual males” who developed a rare form of pneumonia known as pneumocystis carinii.
The July 3 issue included a seemingly unrelated article about young gay men who had developed Kaposi's sarcoma, a condition seen previously only in the elderly. That same morning, The New York Times reported the finding under the heading “Rare cancer seen in 41 homosexuals.” The article appeared on Page 20.
The “gay plague” was born.
By the time Mr. Fash was back on his feet again, in the spring of 1982, the disease that afflicted him had a name: Gay-related immune deficiency (GRID). A few months later, a group of U.S. health bureaucrats would rename it acquired immunodeficiency syndrome, or AIDS. The new name was needed because the disease was creeping outside the gay community: New cases were reported in injection drug users, women, hemophiliacs and newborn babies.
It was a bizarre, surreal time. There was a new disease, but no one knew what caused it, how it was spread, or how to treat it.
“The party was still going, but there was this dark, mysterious cloud hovering over it,” Fash recalls. “It was like there was a stalker in town, and we didn't know whom it would get next.”
THE PLAGUE AT 20: Part 2
A SPECIAL REPORT BY ANDRÉ PICARD IN MONTREAL
Saturday, June 30, 2001
Lynn Kampf remembers precisely when she was infected - April 1, 1981. “April Fool's Day. Some joke, eh?” she quips.
After suffering a ruptured ectopic pregnancy, Kampf, then a pediatric nurse, had required surgery, along with a blood transfusion. Twenty years later, she is an active retiree living in Pickering, a comfortable bedroom community east of Toronto. She dotes on her grown children, plays tennis four times a week, and travels the world with her teacher-husband. This week, they are off for a cruise in the Bahamas.
“I'm not your typical person with HIV-AIDS,” Kampf says, her smile ever-present. But the reality is there is no typical sufferer, and no typical course for the disease. The virus is as unpredictable as it is wily.
HIV-AIDS hit first in the gay community because of risky sexual practices. It then devastated the hemophilia community and affected transfusion recipients because Canada's blood supply had been inadequately screened. It gripped injection drug users because they share needles. Today, because of a combination of all these factors, it is tearing through the prison population, aboriginal communities and heterosexuals.
Slowly but surely, the virus is showing that it doesn't discriminate: People in all walks of life and of all ages are targets. In reality, it's not one epidemic, but a series of overlapping epidemics: As one wave crests, another crashes, but the pool of infected grows steadily larger.
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The exact origins of HIV-AIDS are unknown. The most detailed and accepted theory is that a single viral ancestor - known in scientific circles as HIV Eve - first infected humans as far back as 1930.
The virus, which resembles the simian immunodeficiency virus (SIV), jumped from a chimpanzee to a human somewhere in west equatorial Africa, perhaps when a hunter ate an infected animal's brain. It remained within a small group of humans, but sprung up sporadically. Medical journals carried occasional reports of strange cases of patients whose immune systems had collapsed that hint at HIV-AIDS being an old disease.
In 1959, a 36-year-old carpenter identified only as G.Y., died in Toronto General Hospital of an extremely severe case of pneumocystis carinii pneumonia (PCP). University of Toronto pathologists reported in the American Journal of Clinical Pathology that, in the year before he died, the man had been in hospital with various infections five times and had suffered sudden weight loss, fever and night sweats. G.Y. was probably Canada's first AIDS case.
That same year, the earliest tissue sample indisputably tested positive for HIV was taken from a Bantu man who died in what is now Kinshasa, capital of the Democratic Republic of Congo. The ailment remained relatively contained until the 1970s, when massive social upheaval and the construction of highways created ideal conditions for it to spread. The road linking Kinshasa, site of a 1975 outbreak of “wasting syndrome,” with Kampala later became known as the “AIDS Highway,” but the disease soon went beyond Uganda.
On July 4, 1976, tall ships from around the world gathered in New York to mark the U.S. Bicentennial. Sailors from 55 countries and tens of thousands of tourists gathered for one of history's great parties. Randy Shilts, author of the seminal work And The Band Played On, argues that the seeds of the North American epidemic were sown that day.
Gaétan Dugas, a handsome, gay Canadian flight attendant with a voracious sexual appetite, had a ball at the bicentennial. Years later, investigators at the U.S. Centers for Disease Control zeroed in on his activities, with good reason. Dugas was among the “previously healthy homosexual men” whose Kaposi's sarcoma prompted the initial press report. An inveterate traveller, he had slept with the first two men diagnosed with the disease in New York as well as nine of the first 19 victims in Los Angeles. Over all, he had sex with 40 of the first 248 men who developed the condition in the United States - one in six and covering eight cities.
Dugas was, to the epidemiologists, Patient Zero - not necessarily the first with the disease, but an early propagator. More important, his story demonstrated that the disease was sexually transmitted and not some kind of cancer. (There was also a widespread theory that “poppers,” or amyl nitrite, a drug popular in gay clubs and bathhouses, were causing the PCP and Kaposi's sarcoma. Another theory: It was a virulent form of swine flu.)
Luckily for medical science, Dugas meticulously documented his sexual conquests in a little black book - more than 2,500 of them in an array of destinations reached from his base in Dartmouth, N.S., thanks to his airline pass. He was a frequent visitor to Paris and Haiti's capital, Port-au-Prince, two cities hit early and hard.
But when he got sick, Dugas came home to Canada. In 1983, while on extended sick leave for “cancer treatment,” he settled in Vancouver, where he was a frequent visitor to the bathhouses even though his condition was widely known. Finally, he was literally driven out of town by members of the gay community.
Vancouver also was the site of a study that was among the first to demonstrate just how devastating the epidemic was.
Concerned doctors at the downtown St. Paul's Hospital, suspecting that all the lymphatic swelling they were suddenly seeing was a sign of something serious, investigated and “we found out that 35 per cent of gay men had swollen glands,” recalls Martin Schechter, an epidemiologist who worked on the project. “We knew that one in every three men had it - whatever `it' was.”
It soon became obvious that an infectious agent was being transmitted, and the idea of “safe sex” was born. But when Dr. Tim Johnstone, B.C.'s chief epidemiologist, asked the Social Credit government of the day for money to teach members of the gay community how to protect themselves properly, a cabinet member flatly refused. He had a better solution: Quarantine them all on an isolated island in the Queen Charlottes that once served as a leper colony.
Even now, some politicians and policymakers try to hide AIDS instead of confronting it.
THE PLAGUE AT 20: Part 3
A SPECIAL REPORT BY ANDRÉ PICARD IN MONTREAL
Saturday, June 30, 2001
Dugas died on March 30, 1984, at Hôtel-Dieu Hospital in Quebec City. Three weeks later came the confirmation that AIDS was indeed caused by a virus, the human immunodeficiency virus (HIV).
Dr. Robert Gallo made the announcement, with much fanfare, in Washington. It would later emerge that the finding was based on the work of French scientist Luc Montagnier, whose similar discovery a year earlier had been dismissed. Today, the bitter rivals are considered co-discoverers of the virus.
Margaret Heckler, secretary-general of the U.S. Health and Human Services Department, boldly predicted a vaccine within two years and the eradication of AIDS by 1990. With millions in profits at stake, pharmaceutical companies worked around the clock to develop test kits. Within months, they were on the market.
It was now possible to determine who was infected, and the prevalence in certain communities. This information fuelled prejudice and a backlash, especially because testing did nothing to show how the disease travelled - some people feared catching it from toilet seats or simply by kissing.
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The hysteria hit a peak in 1985, when movie star Rock Hudson's disclosure that he was infected put AIDS on the front pages. But it also reinforced the notion that only gay men were really at risk.
“The doctor told me: `Don't worry about AIDS, you're probably immune,' ” one well-known activist recalls. “At the time, lots of people thought that only the ‘4-H club' was at risk, that the rest of us had nothing to worry about.” (This 4-H club included the four groups believed to be the only ones really at risk: homosexuals, Haitians, heroin users and hemophiliacs.)
Janet Foyle, as she was known back then, worked in the microbiology lab at Victoria General Hospital in Halifax, one of the first places in the country to test for HIV. Early in 1986, she started dating the man she would marry, and a couple of weeks later, he tested positive for HIV. Randy Conners was a hemophiliac, one of the 2,000 Canadians infected by tainted blood.
Her test came back negative, as it did every three months for the next three years. Although the doctor said it was unnecessary, the couple always used condoms, but breakage was common, and Conners is certain this is how she was infected. “When I look back, I realize just how poor the information was that we were given. The doctors were ill-informed and, even though we were smart people, we didn't use condoms properly. We should have been using lubrication too.”
Her husband was already a backroom activist, but after her diagnosis they went public, giving a human face to Canada's tainted-blood scandal, a drawn-out affair that eventually led to a full-scale public inquiry, billion-dollar compensation program and the creation of an agency to supervise the national blood supply.
Conners plowed her energy into sex education, convinced the next generation held the key to halting the epidemic, but lately she has become disenchanted. “I realized that my one-hour talk was the only AIDS education these kids were getting in their school career. We've got to do a lot better than that if we want to protect them.”
She also is concerned about the media's blasé attitude. “The kids today see a [positive] diagnosis as ho-hum. They think you can take a few pills and life goes on. The shock just isn't there any more.”
“I'll tell you something - my positive test was the biggest shock of my life,” says Jean-Pierre Bélisle. “In that instant, I moved from the winners' column to the losers' column.”
Bélisle is a professor at the École des hautes études commerciales in Montreal who became sick in 1986 and entered hospital for tests, one of them for HIV. “I had a good university career, a stable relationship, a wonderful life, and all of a sudden I found myself in isolation at the hospital, treated like a leper. My God, they wouldn't even bring me coffee without putting on a space suit.”
Quiet and monogamous, he did not live the stereotypical gay life and so had believed he wasn't in danger. To protect his career, he kept his diagnosis secret from everyone but his partner until 1990, when he landed back in hospital with an intestinal infection. “I'm not sure what was the biggest shock to my parents that day: My being gay or my being HIV-positive. But I'm their son and they love me, and that was that. I was not rejected and ostracized like so many gay men.”
Buoyed by the support, Bélisle returned to good health and his career thrived. But then in 1993, while sitting in his back-yard pool with a friend, discussing the ravages of the epidemic, he had an epiphany. “I realized that I was living my life in a bubble. I wasn't participating in the community at all. I decided right there to become an activist. I said to myself: `If someone in my position can't speak out, then no one ever will.' ”
Within months, he was president of a provincial advocacy group and a director of the Canadian AIDS Society. When his photo appeared in the city's largest circulation newspaper - filling a half-page on a Saturday, no less - he braced for the worst.
Instead, one neighbour raked the leaves from his lawn, another dropped off some baked goods and the lady at the corner store simply said: “Bravo.” Bélisle was moved.
THE PLAGUE AT 20: Part 4
A SPECIAL REPORT BY ANDRÉ PICARD IN MONTREAL
Saturday, June 30, 2001
“That was the age of bliss for AIDS: Elizabeth Taylor, Magic Johnson, the red ribbon,” Glenn Fash says, lighting a Craven A and taking a long drag. “It was as if AIDS had come out of the closet. It was a very positive time.”
In addition to mainstream recognition, the 1993-94 watershed period brought the first drugs and the start of “treatment activism” - the aggressive campaign for greater investment in AIDS research and speedier access to new, often experimental drugs.
Scientists had boldly predicted a rapid cure when the virus was discovered, but reality had turned out to be very different. The only treatment available, Zidovudine (AZT), had hit the market in 1987, but people got ill and eventually became resistant to it.
Then in 1993, Mark Wainberg, an intense McGill University researcher, discovered the benefits of 3TC, now the world's biggest-selling AIDS drug.
“By 1994, a lot of people were beginning to fail with AZT and there was nothing else,” recalls Martin Schechter, who is now national director of the Canadian HIV-AIDS Trials Network. “3TC came along and it was a bridge. It kept many people alive until the arrival of the new drugs.”
After 3TC came ddi and ddC, and then protease inhibitors, the quantum leap forward that allowed researchers to concoct drug “cocktails” to keep the virus at bay. (All AIDS drugs block the virus from replicating, but each new class works on a new enzyme.)
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The gay community played a crucial role, willingly joining clinical trials in large numbers. Fash and Bélisle were keen participants, and in the summer of 1994, the two Montreal activists - one in the English community, the other in the French - crossed paths for the first time at a forum in Toronto.
“It was like suddenly meeting someone who was living the same experience as you,” Bélisle recalls. “It was marvelous.”
Fash agrees. “I had given up hope of finding love again, and I found it in the most unlikely place.” It was a love that symbolized the end of a dangerous time, the start of an era of hope.
Less than two years later, Fash was fading fast, but then joined a historic drug trial. Picked in a patient lottery, he was among the first Canadians to receive an experimental triple cocktail - AZT, 3TC and saquinavir, a protease inhibitor that stops HIV from infecting new cells.
When the trial's preliminary results were announced at the 1996 International Conference on AIDS in Vancouver, it was an electrifying moment. Researchers reported that the amount of virus in the blood of people with very advanced cases of AIDS plummeted, and their immune systems bounced back. No one dared say it out loud, but the word “cure” was being whispered in every corridor.
Thousands of sufferers started taking the cocktails, more properly known as highly active anti-retroviral therapy (HAART). Those who could afford it, that is. At $10,000 to $15,000 a year, the treatment was too costly for sufferers in developing countries.
The impact was immediate. In Canada, the United States and Europe, the death rate from HIV-AIDS fell by 80 per cent, a stunning reversal for a disease that had been untreatable.
In the fall of 1998, Lynn Kampf started experiencing strange symptoms such as blurred vision and neuralgia (a very painful condition caused by inflamed nerves). Her T-cell count fell to 47, meaning her immune system was virtually non-existent, and she was susceptible to infections. She had fully developed AIDS.
“I figured this is it, I'm going to have to start smoking dope,” she jokes. Instead, she was prescribed a drug cocktail.
Her seven-pill-a-day regime reduced the amount of virus in her bloodstream to undetectable levels, and caused her no side effects. But about that time, the cure bubble burst as the scientific news became increasingly bleak.
The cocktails worked all right, but the schedule could be punishing. (Some pills must be taken with fatty foods, others on an empty stomach; some once a day, others six times.) When the regime is not followed to the letter, the virus can mutate, growing resistant to the drugs, and making treatment infinitely more complicated.
Then there were the side effects. Aside from the usual nausea and diarrhea caused by many drugs, users of the cocktails started seeing some strange changes in their bodies. They developed buffalo humps (a big lump of fat on the back of the neck), protease paunches (huge accumulations of fat in the belly); their limbs became stick-like, and their cheeks sunken.
Those were only the outwardly visible problems. Cholesterol levels rose to stratospheric levels, and livers were damaged to the point where people with HIV-AIDS started developing cardiovascular disease and cirrhosis.
Worse yet, it emerged that HIV could hide and spring back to deadly force if the drugs were discontinued. Only after 70 years of therapy would the virus be totally eliminated.
Nobody can endure such a toxic cocktail anywhere near that long. At age 45, Janet Conners finds herself lactating and entering menopause at the same time, and last August, she suffered a heart attack.
“The media, the politicians and some health-care providers have gotten caught up in the hoopla. They perpetuate this fairy tale that you can take a few pills and life goes on. Well, think again,” she says.
Schechter, head of the HIV-AIDS Trials Network, agrees that cocktails are not a panacea but says they can help people hang on until other treatments come along. He insists that the battle must be won in the streets, not in the lab, but says resources for prevention programs are woefully inadequate. “We predicted in 1985 that HIV-AIDS would spread to our inner cities, to IV drug users, prisoners and the aboriginal community. We had solid evidence, but it was ignored, and that's why the epidemic is still growing.”
There is at least one bright spot: Doctors can prevent virtually all newborns from being infected - by treating HIV-positive mothers with drugs, delivering the babies by cesarean (to reduce exposure to blood in the birth canal) and by counselling against breast-feeding.
The problem: fewer than half of all pregnant women are tested. “I just diagnosed an infant with HIV-AIDS this morning,” says Stanley Read, head of the HIV-AIDS Family-Centred Program at the Hospital for Sick Children in Toronto. “We still have one to two cases a month, cases that are completely preventable. If moms knew how important it is to get tested, I think they would demand it. But we're not doing a good job of education and prevention.”
Public-health officials, of course, dream of a vaccine that can stop the virus in its tracks and long for the day an AIDS shot is part of routine childhood immunization. Yet that goal is proving elusive. More than 30 vaccines have been tested on humans, but even the most optimistic concede that there is unlikely to be anything on the market before 2015.
Even then, it may never offer blanket protection. Unlike most infectious diseases, HIV does not routinely allow those who recover from it to become immune. The virus not only mutates quickly - about one million times faster than the human genome, according to new research - it also targets the immune system itself for attack.
THE PLAGUE AT 20: Part 5
A SPECIAL REPORT BY ANDRÉ PICARD IN MONTREAL
Saturday, June 30, 2001
As the world waits for an AIDS vaccine, the miracle of drug cocktails has soured. It is now a penitence, not a cure.
Jean-Pierre Bélisle started on HAART in mid-April, after putting off treatment as long as physically possible. He feels that since the early battles for rapid drug access, the pendulum has swung too far the other way and people with HIV-AIDS have become guinea pigs for poorly tested and tracked medications.
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“We need a new wave of activism, we need to demand good science. HIV-AIDS has become commercialized. The only education physicians get is from pharmaceutical companies.”
His partner, however, has stopped taking all drugs - not on principle but because they have made him too sick. After five years on cocktails (the most recent called for a staggering 27 pills a day), Fash finds his liver badly damaged, his cholesterol dangerously high and his body strangely reshaped. “I feel really scared right now. I've been plunged back into the unknown, just like I was 20 years ago.”
He predicts that there will be another wave of deaths in the very near future, as long-time cocktail users like himself find they can't go on. “This idea that HIV-AIDS would become just another chronic disease like diabetes was a nice dream, but it's not reality.”
Lynn Kampf has heard the doubters, but she simply refuses to succumb to pessimism. She has defied all the odds by living 20 years with HIV-AIDS, a feat she attributes to a mixture of good luck, prayer and sense of humour.
The bumper sticker adorning her van summarizes her philosophy of life: “He who laughs lasts.” But the joking stops when she is asked about the future.
“I'm not sure what it will take to get control of this awful epidemic, but I'm damn sure I'll be here for a long time still.
“You'll be talking to me again when it's the 50th anniversary of AIDS.”