Synopsis: When AIDS first became widespread in the 1980’s, it was a death sentence. A doctor who has spent her entire career on the front lines of HIV recounts the gloom and desperation of the early days and the transition of HIV into a treatable chronic disease.
Host: Nancy Benson. Guests: Dr. Susan Ball, Associate Professor of Medicine, Weill Cornell Medical College, Assistant Director, Birnbaum Unite, Center for Special Studies, New York Presbyterian Hospital and author, Voices In the Band: A Doctor, Her Patients, and How the Outlook on AIDS Care Changed From Doomed to Hopeful
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HIV IN HISTORY
Lynn Holley: Imagine a huge passenger ship sinking with no lifeboats on board. Every last person on that ship is doomed. Now imagine that all anyone can do is watch from the shore, helpless. That’s how many doctors felt in the early days of the AIDS epidemic.
Susan Ball: We knew that we just did not have effective treatment for it. We had learned a lot. The first AIDS, HIV and AIDS cases appeared in the United States probably in the late ‘70s, but the first medical journals began reflecting that presence in 1981, so it had been already a decade of increasing numbers of patients getting sick and dying. And we knew a lot about it, but we just did not have effective treatment. The burnout rates among nurses and doctors was very high, precisely because so many patients died, and that was very tough on providers.
Holley: That’s Dr. Susan Ball, Associate Professor of Medicine at Weill Cornell Medical College and Assistant Director of the Birnbaum Unit of the Center for Special Studies at New York Presbyterian Hospital. She’s also author of Voices in the Band: a Doctor, Her Patients, and How the Outlook on Aids Care Changed From Doomed to Hopeful.
Ball: This is a very frightening time for patients, and there was so much stigma because of the fear and that mystery about it. The patient population engendered a real prejudice and stigma, and people were frightened of the virus itself. You may remember a young man named Ryan White, who was really just a boy, who was an hemophiliac who was infected in 1987, and I think he was twelve or so when he was first diagnosed, and he just wanted to go to school, but people at the school didn’t want him in the school because they thought they might get infected.
Holley: The gloom of knowing every patient you have will die weighed heavy on many care providers. Many across the country were burning out. But, Ball’s team persevered.
Ball: We actually had a support group that met every two weeks and all the providers, not just the doctors, but all the people involved with patient care were invited and encouraged to come to that support group. And there we could talk about our fears, we could talk about our sadness, we could talk about the complications of a patient that we were puzzled by or couldn’t figure out how to help. And this opportunity, I should say, to share and distribute that intense sadness, I think that really bolstered all of us.
Holley: But because there were no effective treatments during the early years, desperate patients were frequently left grasping at straws.
Ball: So we saw people trying all kinds of alternative treatments. Some of them, yes you would say, “Oh my gosh who would wanna do that?” We tried not to discourage our patients from trying things in the setting that we had nothing better to offer. We just tried to strongly urge patients not to spend vast amounts of money on stuff that was unproven and also certainly not to do things that were overtly gonna be dangerous. But patients, there are all kinds of wacky things out there. There was something with bitter melon. There was the peptide tea that was in the Dallas Buyers Club. There was a guy in Italy doing, he was extracting people’s blood and boiling it and then re-infusing it. There was a lot of really, really wild stuff going on out there. We could raise our eyebrows at some of it, but we couldn’t really blame patients because they said, “ you know, get me something better.” We, our hands were empty at that time.
Holley: Then when AZT came out in 1987, it was greeted with jubilation, at least at first. By that time, millions of people around the world had died of AIDS, so news that was even the slightest bit hopeful was cause for celebration.
Ball: There were a number of side effects associated with AZT, and a lot of the patients who started on it, who took AZT, were already so ill that that one drug alone was not gonna turn around their course. So it had disappointing results for many, and so the street vibe on AZT turned against it rather quickly I would say. And although AZT is still a good drug, and we still use it in some patients in combination therapies, not a lot, but it’s still around, and the reason it got approved was how it works against the virus, and there are other drugs in that class that are a little bit better tolerated that we use instead, but back then AZT was at first greeted very joyfully even though it proved itself to be not that effective quite soon.
Holley: Several other drugs followed over nearly another decade, but all of them proved to be ineffective against HIV. So when protease inhibitors were introduced, patients were skeptical.
Ball: Initial drugs were approved, I would say, in 1995 because we were using them here and there and having good results so we were saying to ourselves “This looks good, this looks good.” But the first real paper presented with, again, this large case control study was in Vancouver at the international conference in 1996 and this was a very large conference where people from all over the world came. And previously, those conferences, they were held annually and people would come away from them just more and more disappointed because the only news would be increasing numbers of patients infected, increasing numbers of deaths. So we would always come away from those conferences just sort of depressed.
Holley: But protease inhibitors were no false hope. Finally doctors could return to their patients with good news.
Ball: The mantra that we began using was something, I forget who coined it, but we said “Hit early, hit hard” meaning to get the patients on these drugs and give them this whole cocktail of medications because this will reduce the amount of virus in their blood and this will allow their immune systems to recover. Patients who got on these medications and could take them, we saw their health improve, people who were really virtually on the verge of death being healthy again. It was quite remarkable.
Holley: Since then, researchers have made tremendous technological progress in the science of immunology and virology. Today, drugs can now be specifically tailored to the genetics of the virus. And now, as horrible as it was to be on the frontline when no treatments were available, Ball can see the rewards of perseverance.
Ball: When a patient does well and comes into the office looking healthy and feeling good, or they’ve had a child or gotten married or gotten a new job. We can share in those triumphs and that really is very rewarding. And it was a time in medicine really a time in the history of the epidemic, in the history of the United States I think, the ‘90s that were so important to see this disease that had been so terrible come under our control and that was I think a very important time, so I feel very fortunate to have been a witness to this.
Holley: You can learn more about our guest Dr. Susan Ball and her book Voices in the Band through her website, susanballmd.com or by visiting our web site at radiohealthjournal.net. You can find archives of our programs there as well, or also on iTunes or Stitcher. Our writer this week is Polly Hansen. Our production directors are Sean Waldron and Nick Hofstra. I’m Lynn Holley.