A Doctor's Perspective: Care Then and Now
In the late '70s and early '80s, a group of about a dozen downtown Toronto doctors had in their medical practices large numbers of gay men and some injection drug users. Similar situations existed in Montreal, where the Clinique médicale l'Actuel became a focal point for HIV care, and in Vancouver, where the BC Centre for Excellence in HIV/AIDS was established in 1992. These doctors had patients who experienced a fair number of sexually transmitted infections. They also had patients who presented with weird infections similar to infectious mononucleosis (mono). They came to our offices with fever, rash, sore throat, swollen glands and minor laboratory abnormalities.
These peculiar infections resolved, and the doctors just attributed these temporary illnesses to another infection picked up in the bathhouses or through needle sharing on the streets. No one put these individual cases together and wondered whether some common condition could explain their individual patients' illnesses. Yet an epidemic -- the AIDS epidemic -- was exploding before our very eyes.
Toward the end of 1980 and early 1981 we began to hear rumours of a strange disease that was affecting gay men. These rumours came mostly from patients who were visiting friends and partners in the United States. We heard of a life-threatening pneumonia and a new skin cancer called Kaposi's sarcoma, which were hitting gay men in large urban centres -- particularly New York, San Francisco and Miami.
On June 5, 1981, the U.S. Centers for Disease Control (CDC) in Atlanta, Georgia, published the first report of five gay men who had been struck with Pneumocystis pneumonia (PCP). This was the first official medical publication describing a new disease that eventually became known as AIDS. I can't boast to normally read CDC reports; however, my partner in medical practice at the time, Dr. Michael Rachlis, subscribed to them. So, fortuitously, I was able to read the first report describing PCP soon after it was published.
Those first few years of the early '80s were very scary. It quickly became apparent, in particular to primary care physicians and general practitioners, that there were no experts in the field of HIV and AIDS. There were no consultants or specialists who had any more experience than we did and there was little or no medical literature on the subject. As an example of how little information was available, doctors actually used to clip articles from various medical journals and keep them in files -- an unimaginable task today when tens of thousands of articles are published annually on HIV.
The identity of the virus responsible for causing AIDS was not conclusively determined until the spring of 1984, and the first HIV antibody test did not become available until 1985. So for the first four and a half years after AIDS was described in the CDC reports, we doctors had to rely entirely on our clinical assessment to deduce if someone might be infected with this strange virus that caused AIDS. Early on it became apparent that people at risk presenting with swollen lymph nodes were likely infected with the virus. Detecting enlarged lymph nodes in men at risk for HIV meant that doctors were examining doomed men.
For the first 15 years after AIDS was first reported, serious illness, an avalanche of deaths and very little hope characterized the epidemic. Although small strides were made in the late '80s and early '90s, illness and death rates were not substantially reduced until 1996 with the advent of combination therapy, otherwise known as HAART (highly active antiretroviral therapy).
In the '80s and early '90s many physicians felt shell-shocked as we watched our patients wither away and die after a ferocious onslaught of life-threatening infections and tumours -- often as many as five such fatal conditions occurring simultaneously in one patient. Physicians could do very little except rely on the most noble traditions of medical practitioners, which were to be unconditionally available and to be kind. In many medical practices, four to six patients a month were dying. The death certificate accompanied examining equipment in the doctor's medical bag on house calls to the dying. Doctors bore witness to entire social groups that were wiped out by AIDS. No reminiscing, no remembering significant events, no collective memory and no evolution of group relationships over a normal lifespan.
The Landslide Ends
HIV care has advanced substantially over the past 35 years. Barriers to patient autonomy have been broken down and human rights for people with HIV have been largely secured. Over the past 19 years, people -- both those dying of AIDS and those not yet sick, at least in so-called developed counties -- have benefited from research sponsored by the pharmaceutical industry, and many patients have experienced spectacular and unimaginable improvements in their health. Patients in developing countries have not been treated as kindly by the pharmaceutical industry and still lag far behind in achieving access to the full range of antiretroviral medications available in Canada.
In the spring of 1996 I saw a patient who was acutely ill and who was admitted to hospital with a gastrointestinal disorder. He was fairly wasted and had just developed new Kaposi's sarcoma lesions in the palate of his mouth. While in hospital, he started antiretroviral therapy. When I saw him about four weeks after he started treatment, the Kaposi's sarcoma lesions on his palate had completely disappeared. This was the first time, in all my years of being an AIDS physician, that I had ever witnessed the regression and disappearance of Kaposi's sarcoma. In fact, if anyone had told me that Kaposi's sarcoma could be treated to the point of making lesions go away forever, I would have thought that they had gone mad. He was not the only one. Whereas previously men with Kaposi's sarcoma were marked men, in 1996 they watched with exhilaration as the purplish grape-like nodular lesions of Kaposi's, which had ravaged their bodies, faded away, disappearing from their skin and virtually laid to rest in the medical history books.
At the end of June 1996, I visited a patient who was dying at home with AIDS wasting syndrome and AIDS dementia. That was just prior to my departure to the Vancouver International AIDS Conference. I went to visit him to bid my final farewell. Around the same time he also began taking the new medications. By the time I got back from Vancouver three weeks later, he was no longer bed-bound or housebound; in fact, he had resumed his life of partying in the bars and on the streets of Toronto. That patient remains alive and very well today with an immune system that is functioning at the same level as someone without HIV.
The advent of anti-HIV drugs in 1996 fundamentally transformed the landscape of the HIV and AIDS epidemic in developed countries. The firsthand initial experience of AIDS physicians was also reflected in the epidemiological reports issued by the Canadian government. For example, in 1993, 1,838 new cases of AIDS were reported to federal government health officials. By 2014, that number had dropped to 188 cases. In the year 1995, the deaths of 1,764 Canadians were attributed to HIV infection. By 2011, that number had dropped to 303 deaths.
It is peculiar which memories are burnt into people's minds. For me, the images of unyielding suffering and stubborn goodwill of many dying men and women with AIDS, both in Toronto and Africa, is a constant companion whenever contemplating the AIDS epidemic. But one memory stands out: an obscure moment in a conversation at an early AIDS conference shortly after AZT monotherapy came on the scene. I was introduced to two American AIDS doctors. One was an infectious disease pediatrician, short in height with an oval-shaped face and sleek black hair in a quasi-pompadour style. He was dying of AIDS. But he was confident at a time of utter despair that combination therapy would in the future arrest the epidemic of death and control HIV -- he declared so with biblical certainty. He was right but he never lived to see his prediction become reality and transform the lives of countless people. And I never got his name.