HIV and AIDS: A Short History of Diagnosis and Treatment

"Having an infectious disease epidemic in 1983 in the United States was mind-boggling," explained Gerald Oppenheimer, M.A., Ph.D., a researcher and historian with firsthand knowledge of the early days of the global AIDS epidemic. "We were supposed to be in the postviral, postinfectious disease era, focusing on chronic disease, which was what we did. And so this was a totally unexpected epidemic."

A professor emeritus at the City University of New York School of Public Health, Oppenheimer has published extensively about the impact of AIDS on global health infrastructures, as well as the historical and ethical implications of public health practice and chronic disease epidemiology.

In the beginning, Oppenheimer said hospitals hid AIDS patients and prevented access to data from early diagnosis and treatment efforts.

"They were embarrassed by having AIDS patients," he explained. "They felt it would affect their attraction and that other patients wouldn't come, and that foundations would not support their special programs."

It may be difficult to understand the context surrounding those years. The magnitude of the fatalities that doctors and patients experienced is unfathomable to people today, even amid the COVID-19 pandemic. While more than twice the number of people have died of COVID-19, the sense of hopelessness around AIDS in the late 1980s was different from what we experienced with COVID-19.

A clinic with 500 AIDS patients in the '80s could expect to lose as many as 300 within six months of diagnosis.

"The drain of death in their offices was absolutely amazing," Oppenheimer said. "In the beginning, doctors knew nothing. So there was a growing interest, particularly among social scientists, by '85. And also, that was the time when two things of importance happened. There was more money…and the second thing…was that the epidemic had gone into a different kind of stage, a different paradigm. And that was with the discovery of the virus, HIV. Suddenly, this for scientists became a problem of viruses and not a problem of gay sex."

The discovery of HIV represented a massive shift in how doctors diagnosed, treated and researched the issue.

"It was now a prototype scientific problem, which any reputable scientist could now go into without having to answer too many questions about his or her own sexuality," Oppenheimer said.

Prior to the discovery of HIV, doctors had to tip-toe around the issue and operate in secret as they tried to stave off the death and suffering of their newly diagnosed AIDS patients. They were forced into a position of hospice care rather than disease treatment, due in part to the social stigma surrounding the condition they were attempting to combat.

Paul Volberding, M.D., is a retired professor from the University of California at San Francisco. His work in HIV/AIDS research gives him a unique ability to understand the social progress surrounding these conditions.

"The treatment is so easy," he said. "It is really, literally one pill once a day with essentially no side effects. If you're old enough to remember, the earliest treatments were really complicated: handfuls of pills with lots of side effects. Those days are gone."

Upon HIV diagnosis today, patients enter what is called the continuum of care, a phrase indicative of the evolution of our management of HIV and AIDS. The six-month journey after HIV diagnosis that previously ended in death has been replaced by the path to becoming "undetectable." This means HIV has been fully suppressed in the patient and exists in such low quantities inside the body that highly advanced medical technology can no longer identify the virus.

Perhaps even more remarkable is how undetectable, HIV-positive patients can have intimate relationships with effectively no risk of transmitting the virus to others. The U=U campaign—undetectable equals untransmittable—has had a massive impact on the destigmatization of HIV/AIDS. U=U represents tremendous medical and scientific progress over the past 40 years.

However, the progress doesn't mean HIV diagnosis has become a casual experience for patients.

"There's so much in our society where sexual issues are tied up with stigma and shame and misunderstanding," Volberding explained. "A lot of physicians aren't aware anymore of the realities of treatment; you know, the fact that we have a very simple once-a-day pill or even injections every one or two months that can completely prevent transmission. Most docs aren't aware of that and aren't letting their patients know about it.

"And so I think, again, we have to admit that this is still a diagnosis that for many, many people is a real shock," he continued. "I think it helps explain why a number of people still haven't been diagnosed. They're so afraid of this diagnosis that they're not even willing to be tested. That's a huge issue. It just reflects, I think, the fact that while you might think this is no big deal anymore, for a lot of the population, this is absolutely still a big deal."

Diagnosis and treatment of HIV have come so far from the days when there wasn't even a name for the condition. These days, HIV is a highly manageable condition—now classified as a chronic disease—and patients diagnosed with the virus don't need to fear they will eventually succumb to the illness, which killed so many in the past. HIV-positive individuals can live their lives, build their families and follow their careers with little concern for HIV in their day-to-day lives.

Which begs the question: What's next for HIV medicine?

"We don't have a vaccine," Volberding said. "People these days, given the pandemic that we've been through, are a whole lot more understanding of viruses and transmission and treatments and cures. And I think people are in a better position to understand that HIV is not curable but it is controllable. We have the tools we need already.

"There's research on an HIV cure, and it's all very exciting, it's great science. But in terms of what we need to really improve the health of our population, what we need is a kind of better understanding of who's at risk, a better understanding of the barriers that keep them from being diagnosed and treated, and helping reduce the barriers to PrEP," he added, referring to pre-exposure prophylaxis, a medicine that reduces your chances of getting HIV.

HIV and AIDS are no longer death sentences, thanks largely to the efforts of doctors, researchers and advocates over the past four decades. That is something to celebrate.