MADDIE SOFIA, HOST:
You're listening to SHORT WAVE from NPR.
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SOFIA: This past Sunday was World AIDS Day. So today - a look at just how much has changed since the first reports of a mysterious lung epidemic in 1981.
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UNIDENTIFIED REPORTER #1: Findings show that a form of cancer has suddenly surfaced in unusual amounts in gay men.
UNIDENTIFIED REPORTER #2: There are now cases in Atlanta, Houston, Philadelphia, Boston, Miami and Baltimore.
UNIDENTIFIED REPORTER #3: So far, doctors can only speculate on the causes and the connections.
SOFIA: But we've come a long way since then. Globally, AIDS-related deaths have dropped by more than 55% since 2004, the deadliest year on record. A big reason for that - better drugs to treat people with HIV, the virus that causes AIDS; if you have access to those drugs. More on that later. But the road to effective treatment was a long one, especially for people living with HIV.
STOSH BAILEY: My name is Stosh Bailey (ph), and I was diagnosed in 2004.
SOFIA: Yes, newer drugs could save your life, but they also came with a cost.
BAILEY: The first medication was difficult to tolerate. I suffered from a couple of pretty nasty side effects, actually - really disturbing sleep patterns, depression, just endless nightmares. On top of that, it's been since proven that the toxicity effects can lead to liver and kidney damage.
SOFIA: It took Stosh nearly a decade to find the treatment that worked for him.
BAILEY: And so it was a process of elimination and just a lot of patience.
SOFIA: These days, Stosh is living a healthy life with side effects that he can handle. His treatment now is pretty simple - just two pills before bed each night, not a bunch of pills throughout the day.
BAILEY: It's just night and day. It certainly liberates you from having a pill caddy with you all the time versus having to circle back around at noon and then circle back around before bedtime and then ask myself if I took my morning pills. And, you know, it's been liberating in that respect.
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SOFIA: So today in the show - the science behind three decades of medical advancement for treating people with HIV and what still needs to be done. We talk with a doctor who's been on the frontlines of this epidemic for decades.
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SOFIA: Today we're talking about the progress that has been made in HIV treatment over the past three decades. Dr. Maggie Hoffman-Terry has spent the past 25 years researching HIV and providing care to patients living with the virus. Once we started to understand, you know, the basics about HIV before we had any treatments, tell me a little bit about what that time period was like.
MAGGIE HOFFMAN-TERRY: I think very scary because initially, we didn't know even how HIV was spread. My first exposure to it was as a pre-medical student. I went over to a local hospital and worked with the infection doctor there. But he took me in to see two cousins who both had HIV and held their hands without gloves because he said, I think it would be a terrible thing to be alone and to not be able to touch someone and to be this sick because they were both dying. And beyond that, they just didn't know what to do except to keep people going as long as you could. They used lots of different palliative kind of things, the things that we use at end of life to this day with cancer patients. But that was all that was available to us.
SOFIA: And, really, so the first ray of hope was really AZT, the first drug that was used to treat it.
HOFFMAN-TERRY: That is true. I remember the posters vividly from my third year of medical school with an alarm clock on that said, if you're willing to get up every four hours and you have AIDS, we have a drug for you. I went to medical school at Temple in North Philadelphia, which was a very hard-hit area in the AIDS epidemic, even early on. And people were lining up to get this magical drug. Even if it meant you got up every four hours to take it, at least it gave people, finally, some hope.
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SOFIA: Before we talk about how HIV drugs work, you need to know a couple of things. Our immune system is made up of all kinds of different cells. One type, called T-cells, specializes in protecting our bodies from viruses like HIV. Maggie calls HIV a smart virus because it specifically attacks those T-cells. Basically, the virus kills the very cells that are trying to hunt them. One way HIV kills T-cells is by hijacking the genetic machinery inside those cells, forcing the cells to make more and more copies of the virus, eventually bursting out of the cell, killing it. So AZT, the first major drug, targeted HIV pretty early on in its viral lifecycle, disrupting this process.
HOFFMAN-TERRY: The problem was that AZT worked for a few months. But in and of itself, as a single agent, the virus was smart enough to get around it. So it improved things for a few months, but it never improved things in the long run.
HOFFMAN-TERRY: That continued. I did my infection fellowship 1992 to 1994, and it was still similar at that time. You were uniformly telling young people time and again that they were going to die and that they should get their affairs in order. And if they had children, we would get them to meet with a case manager to figure out who was going to raise their children. It was just a terrible time.
SOFIA: Yeah. I can't imagine what that was like.
HOFFMAN-TERRY: I think what often kept us going was the dream that better treatment would come along. And we were fortunate enough in our fellowship to be involved in the early studies on protease inhibitors.
SOFIA: Right. So let's talk about that because that was another big development. Another big moment in this treatment was the development of HAART and protease inhibitors, so talk to me a little bit about those.
HOFFMAN-TERRY: So HIV is like snowflakes in the body. Every time it divides, it mutates at at least one spot. And by doing so, no two viruses in the body - in your body, if you're infected with HIV, no two viruses are alike. In that way, it is able to figure out how to get around AZT. So what we did was we developed drugs that hit from other targets and were more potent. So HAART stands for a highly active antiretroviral therapy. And by combining three drugs that were working at - you know, usually, at least two different angles, two different ways in the body, we were able to finally get the virus all the way controlled, get it down to what we call undetectable. But if we stop the medicines, it will come back. But having said that, many of them were anywhere from 10 to 18 pills a day. And they often cause side effects, you know, such as nausea, vomiting and lipodystrophy, which was this redistribution of fat. But as these single tablet regimens came out, they did not cause these side effects.
SOFIA: Right. So that kind of brings us to the next big game-changing moment around 2007, where, you know, a lot of those treatments that are a lot of pills have become kind of one or two pills.
HOFFMAN-TERRY: Yes, so the single pill once a day, you know, very much changed the game from having to rearrange your day around two to three times, having to ingest multiple pills. So they were much better and much easier to take and greatly improve people's both compliance with the medicine, the likelihood that they would take it every day and their virus wouldn't develop resistance, but improve their lifestyle also because all they had to do was make sure they took that pill as they went to bed each night or with breakfast each morning.
HOFFMAN-TERRY: Safer single-tablet pills have come along now containing integrase inhibitors, and those are very easy and much, much less toxic pills to take. And I think we're really, finally, at the point in time that easy one-pill-a-day combinations are here.
SOFIA: Maggie says these treatments, when used correctly and effectively, also act as a form of prevention when it comes to transmitting HIV through sex.
HOFFMAN-TERRY: Treating HIV itself and getting that viral load down to undetectable prevents many, many infections because even if a patient sleeps with someone else - you know, so someone who has HIV, if they're on medication and they have unprotected sex, they are extremely unlikely to spread it to someone else if they are on medication. So that's one type of prevention.
SOFIA: Another form of prevention came in 2012 - a strategy called pre-exposure prophylaxis or PrEP - in this case, a daily pill that's taken by people who don't have HIV, and it prevents them from getting HIV from somebody else. But when it comes to the latest treatments, despite the real progress that's been made, the issue of access to these life-changing medications is also very real.
What still needs to be done so that everybody that needs them has them?
HOFFMAN-TERRY: Well, the drugs need to be affordable because there have been states where the drugs have been waiting listed. We have AIDS drug assistance programs in all of our states, but they are federal dollars that have to be matched by state dollars, and not every state matches them. In Pennsylvania, where I practice, we're very fortunate because we have a very, very good - extremely good program. But there are many southern states where that's not the case, and that has been a problem for a while.
SOFIA: According to the U.S. Department of Health and Human Services, in 2018, only 62% of the worldwide HIV-positive population were accessing antiretroviral therapy. And in some countries, progress towards preventing new infections and increasing access to treatment is actually slowing down or getting worse. But for those who do have access to care, the progress is undeniable.
You know, now that people that do have access to these, like, good HIV drugs are living longer and healthier lives, has that kind of shifted your role as a health care provider and the types of patients that you're seeing?
HOFFMAN-TERRY: Now the big push is looking at getting your patient into old age. And many of my patients - I think our oldest patient currently is 87. But the average age of our patients now is over 50, so we're looking at caring for a later middle-aged and geriatric population. And that is much of what my care is, you know, in today's world. So I admit early in that epidemic, I never thought I would be reading geriatric articles, but that is much of what HIV care is now.
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SOFIA: A big thanks to both Maggie and Stosh for talking with us. Today's episode was produced by Brit Hanson and edited by Viet Le. I'm Maddie Sofia. Thanks for listening to SHORT WAVE from NPR.
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