This article by Sean Hosein first appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
The arrival of the AIDS epidemic in Canada and other countries was scary on so many levels. We watched in shock as previously healthy young men became ill and were robbed of their vitality and eventually their lives. In the early ’80s, scientists had few answers to many of the questions that people and the media posed about AIDS. Perhaps most chillingly, the new disease primarily affected groups that were despised by our broader society, and for years authorities largely turned their backs to the growing epidemic. Neglected by the state, many people with HIV felt a deep sense of a betrayal, abandonment and isolation. This resulted in anger and incited AIDS activists to mobilize and create a plan to deal with the epidemic.
Things began to change but only very slowly. In 1983 French scientist Françoise Barré-Sinoussi discovered HIV and in 1985 the first HIV test became commercially available. But the number of people who died from AIDS kept growing.
The first licensed drug, AZT, had to be given intravenously. At the doses initially used, the drug was toxic. Eventually an oral formulation was made but it had to be taken in high doses every four hours and usually only people in clinical trials could gain access to it. The worst part was that it didn’t cause lasting remission from AIDS. AZT was followed by ddI, d4T and 3TC. These chemical cousins of AZT belong to a class of drugs called nucleoside analogues, or nukes. We now know that nukes are very useful when taken with anti-HIV drugs from other classes, but back then all that was available were nukes. Activists had to pressure regulatory agencies to test combinations of new drugs because if each drug were tested on its own, any remission would be temporary, as HIV could easily overcome a single drug.
Some brave individuals decided that their lives couldn’t wait for the slow pace of research so they travelled to Mexico, Japan and Europe to import drugs that had seemed promising in test-tube experiments. They effectively ran their own clinical trials. Enterprising people in the U.S. established cooperatives called buyers’ clubs. These clubs sold experimental drugs and supplements as cheaply as they could to HIV-positive people. At home people tested a range of compounds. Although buyers’ clubs were prohibited in Canada, activists working with doctors and helpful bureaucrats would later liberalize restrictions to bring in life-saving drugs. Ultimately, none of these bootleg antivirals significantly reversed the course of AIDS, but at the time they were all that were available.
Then, in 1996 at the International AIDS Conference in Vancouver, everything changed for the better. Researchers announced some stunning results: For the first time, people who had been deathly ill with AIDS had seen their health improve thanks to a combination of at least three anti-HIV drugs. The drugs were from at least two different classes; the newest one was called protease inhibitors. For the first time in the history of AIDS treatment, we heard reports of people’s CD4 counts rising and staying up.
Initially, because I had seen so many failed therapies and so many people die, I was somewhat skeptical about the new medicines. But after returning to Toronto, I saw the change with my own eyes—people who had entered the hospital with life-threatening infections were leaving in much better shape. These new potent medicines were called highly active antiretroviral therapy (HAART).
Though people were deeply grateful for the live-saving effect of HAART, we soon heard about the side effects of the first-generation meds. For some, it was explosive diarrhea, for others it was severe nausea or the loss of their sense of taste or skin problems or painful nerve injury.
And then there was the sheer number of pills people had to take. In the mid-90s many people had to take a fistful of pills two or three times daily, sometimes on a strict schedule, with food and water restrictions. And people with HIV had to learn a new word: adherence. Recovering from AIDS and staying well depended on being able to take all those pills every day, day after day, without interruption.
By the late ’90s, a new set of side effects appeared: changes in body shape and appearance as fat, particularly in the face and also in the legs and arms, disappeared. It took some years of clinical trials to show that two nukes—d4T and to a lesser extent AZT—were linked to the side effects we now call HIV lipodystrophy syndrome. Today, leading treatment guidelines no longer recommend that these drugs be used for most people with HIV.
Fast-forward to today, nearly 35 years since AIDS first appeared: Treatment has changed radically. HAART is now simply called ART. Leading U.S. guidelines now recommend that a class of drugs called integrase inhibitors be included in a person’s first regimen. Instead of having to take dozens of pills, an entire regimen can be found inside a single pill that is taken just once daily, either with or without food. And the new meds are much easier to tolerate.
I remember in the early ’90s counselling people on the phone or in person at the CATIE office about their treatment options. In those troubled times it seemed far-fetched that anyone with HIV would ever live to see a day when they could stay healthy, have families and live into old age. Today when I hear HIV-positive people complain about aging-related issues, although I don’t say this, on the inside I’m happy for them because they have survived the worst years of the epidemic when so many others did not.
The power of treatment is so amazing that researchers increasingly expect that many young adults who are infected today and begin ART shortly thereafter will live into their 70s. That is a far cry from the dismal forecasts of the ’80s and early ’90s.
When it comes to HIV treatment, so much has changed since 1981 and more changes lie ahead. Researchers are testing long-acting formulations of HIV drugs, which, if effective, would need to be taken only once every three or six months. One day it may even be possible to create a treatment that only needs to be taken once a year. Although a cure is not likely within the next decade, researchers are hopeful that someday they may be able to put HIV into remission, so that a person does not have to take medicine every day as they do now. Treatment is still imperfect, but change for the better is on the way.
Last spring the results of a large clinical trial called START were announced. The findings clearly show that starting treatment upon diagnosis, even when one’s CD4 count is over 500, prevents many cases of serious, life-threatening illnesses and significantly reduces the risk of death. This has added to the evidence that HIV should be treated as soon as possible after diagnosis. The researchers also found that less than 1% of study participants experienced serious side effects.
So, the longstanding question of “when is the best time to start treatment?” is no longer a question. We now have the answer: We know that the best time to start is as soon as possible.
About the author: Sean Hosein has been working for CATIE since its doors opened in 1990, providing people across the country with treatment information. He is CATIE’s Science & Medicine Editor and author of CATIE News and TreatmentUpdate.