Aids crisis: Looking back

By the 1980s, infectious diseases were no longer considered a threat to physicians and health workers. But a mysterious new disease started spreading to Canada. AIDS had arrived, killing everyone who contracted it and sparking stigmas borne by the fear of the unknown. It was a time of uncertainty, and even panic, in health care, recalls Saskatoon physician Dr. Deirdre Andres. Here is her story.

By Dr. Deirdre Andres

As word drifted north from the United States in the 1980s about a strange new disease, the level of fear in patients and physicians increased. The threats from infectious disease had been lessening decade by decade, with the elimination of smallpox altogether, and other effective immunization programs removing threats like polio – which had made parents fearful each summer. Infectious disease was something we as physicians no longer had to worry about.

But those diseases hadn’t been universally fatal. AIDS, at that point, was.

The young man lay alone in a private room. He was unconscious as a result of an AIDS-related meningitis. Whenever you walked past the room, it was empty except for him, lying alone, with doctors and nurses afraid to go in. There were no family visitors. He died alone.

The fear of becoming infected with an incurable disease that might then be transmitted to those near and dear to us affected career choices, made us wonder what we would do if required to care for an infected patient.

That fear affected people in the community, who worried about exposure and sought reassurance.

A healthy young man makes an appointment. His job requires him to empty the bins containing menstrual care products. “Will I catch AIDS by cleaning them out?” he asks.

We learned that the disease was transmitted through blood and body fluids, which elevated the risk from a specific population to a much broader one. Each patient became a potential source of infection and threat to those providing care. Physicians considered these factors when deciding specialties, when choosing what types of patients they would see. Was it OK to say, “I won’t see gay men”?

We began to fear and distrust patients. Were they infected? Did they know if they were? Would they tell us if they did know?

Universal precautions became the norm: double gloving, no more catching babies bare-handed. Every potential contact with a patient’s blood or bodily fluid was seen as a threat.

We wouldn’t recap needles, or leave them lying on the tray or countertop. We had to dispose of them carefully. Counts became as much for the safety of the doctors, nurses and housekeeping staff, as for patient safely. Although disposable needles and syringes were already available, everything that could be made disposable became so. The amount of plastic thrown away increased.

When testing for HIV became possible on a large scale, we learned about windows of seroconversion, pretest probability, and the risks of false positives when testing low-risk populations. Doctors couldn’t just add HIV serology to the list of CBC, ‘lytes, BUN, creatinine. Signed consent was required.

We learned about informed consent for testing for HIV, because a positive test could affect employment, accommodation, family relationships. Employers, landlords, and friends and family would discriminate on the basis of a positive test, even though by then we knew there was no threat from those kinds of casual associations. As recently as 2017 some men were choosing anonymous testing because of fear of the results getting out. We learned about informed consent for the use of blood products, and learned tolerance for using far fewer blood products. Techniques and technologies for reducing blood loss were developed.

As I started to plan and write this piece, I could feel the same knot in my stomach that I felt when my then-husband decided to enter a specialty with a higher risk of contact with blood and bodily fluids. I again felt the fear when I went in to see that young man in his solitary room. I remembered the fear that pervaded the small city where we lived, where debates were held on whether sexual orientation was a choice or not, when a boy with hemophilia was diagnosed with AIDS.

Now, of course, HIV is a chronic disease, with the possibility of cure being announced from time to time. It’s treatable with complex regimens of medications. The stigma has shifted more to the IV drug users who now have their own acronym, IVDU.

HIV-AIDS had a profound effect on health care, and decimated arts, music and cultural communities, as I was reminded when watching “Bohemian Rhapsody” this spring. For the first time, populations of patients and potential patients mobilized and influenced research, diagnostic and treatment regimens.

These lessons have been applied by other disease advocacy groups. An exponential growth of knowledge occurred when AIDS came to the western world. HIV had existed in Africa for a couple of decades prior, where it was known as the slim disease. The continent lost a generation of parents, leaving children to be raised by grandparents.

HIV brought home the lessons we started to learn from hepatitis B the decade or so before, and likely mitigated some of the harm from hepatitis C, which followed. HIV-AIDS changed ideas about informed consent, about how we interact with and treat patients. It ignited, or reignited, ethical discussions about refusing care based on factors that had little to do with illness, such as sexual orientation. It changed patients’ involvement in health-care policy. It certainly highlighted that infectious disease is not something of the past. Some of the legacies around advances in knowledge are positive; some, like those around stigma, are not.

In 1997, 10 years after the first man lay dying, another man lies dying, of HIV-related malignancy. He’s had several years of anti-retroviral treatment. Even so, it took the development of a life-threatening illness for him to disclose to his family and friends. But now he, too, is in a private room. Nurses offer foot rubs, residents pop in frequently to assess management, family and friends are in and out. He dies knowing he is loved. ◆