What I Wish I Knew About How Much HIV Treatment Would Progress

Human immunodeficiency virus (HIV) attacks the body’s immune system. As it gradually destroys your immune system, HIV can make it so that you are more susceptible to other infections and diseases. If not treated and controlled, HIV can lead to acquired immunodeficiency syndrome (AIDS), the most serious stage of HIV infection.

There is no effective cure for HIV—once people have it, they have it for life. However, HIV can be controlled with proper medical care, allowing patients to lead long, healthy lives.

That wasn’t always the case, Timothy Schacker, MD, a professor of medicine and director of the Program in HIV Medicine at the University of Minnesota, told Health. “I was in medical school in the '80s when the HIV epidemic was first recognized,” he said. “We didn’t know anything about it, and we certainly didn't know how to treat it.”

Once he started practicing medicine in the early 1990s, Dr. Schacker said that “nearly every [patient with HIV he] saw was going to die of AIDS.” Now, that’s no longer the case. “We've come a long way,” he said.

Healthcare providers and researchers were learning as they went in the early days of HIV treatment, according to Dr. Schacker. Today, experts can help people control their disease and even greatly decrease the chances they’ll pass it to others. Here’s what Dr. Schacker said he wishes he had known about how far—and quickly—HIV treatment would progress.

What do you wish you had known earlier on about how HIV impacts the body?

Timothy Schacker, MD: We knew nothing at first. We knew from reports that there was this unusual cluster of diseases associated with profound immunosuppression in men who have sex with men—and that’s about all anybody knew.

What we learned in medical school was what was known about managing opportunistic infections. There was nothing specific about treating the disease. We knew that individuals who had advanced infection had a particular pneumonia, and it was just about managing that. The story unfolded over time.

What do you wish you had known about how testing would progress?

Dr. Schacker: There was no test at first. There was an enormous push in the basic sciences to isolate the virus. I remember that unfolding in my clinical years so that researchers could develop a blood test. Now, if someone is at risk because of a sexual exposure or injectable drugs, they can and should be tested on a regular basis. That's pretty routine now. 

What do you wish you had known about how treatments would progress?

Dr. Schacker: This is a real success story. HIV is now, for the most part, a manageable illness. Before HIV, we really only had one or two antivirals that worked—sort of. The median time from infection to onset of AIDS was six years before we had effective antiretrovirals. We were [trying to delay the worsening of the infection]. What we were doing in the next decade was managing side effects of the drugs and adding some period of time before a person would progress to AIDS.

Now, in the current era, side effects are pretty minimal. It’s one pill, once a day—that pill has three drugs in it. But 10 or 15 years ago, it wasn’t unusual for people to be taking 15 to 20 pills a day, spread out over three to four intervals. We’ve come a long way. 

What do you wish you knew about counseling patients on safety?

Dr. Schacker: It’s changed so much. In the 1990s, most everybody was probably going to die of the disease. We used to counsel patients in the early days around preventing others from getting the infection. Now, we’ve got PrEP—that pretty effectively prevents people from getting the infection. The conversation we now have is around safe sex—there’s more than HIV you want to avoid.

Now we’re managing a clinic near [the University of Minnesota] that specializes in geriatric care for people with HIV. We never thought we’d see that. It isn’t that the complications of the infection are gone; they’re just much less severe and not as frequent.

What do you wish you had known about talking to patients about their prognosis?

Dr. Schacker: I tell patients that HIV is now a manageable illness for most people. Some don’t respond to therapy, but that’s rare. We talk about the fact that it’s a chronic infection and they’re still at risk for some conditions that are more common in HIV-treated people. But when we talk about prognosis, it’s a totally different conversation than what it used to be. I now can tell my patients that my expectation is that they will have a normal or near-normal life span with effective antiretrovirals. It’s remarkable how far we’ve come.