1st AIDS Ward '5B' Fought To Give Patients Compassionate Care, Dignified Deaths

Jun 26, 2019
Originally published on June 26, 2019 1:48 pm

Today, antiretroviral medicines allow people with HIV, the virus that causes AIDS, to live long, productive lives. But at the onset of the AIDS epidemic in the early 1980s, the disease was considered a death sentence. No one was sure what caused it or how it was spread. Some doctors and nurses refused to treat patients with the disease; others protected themselves by wearing full body suits.

Cliff Morrison, a nurse at San Francisco General Hospital at the time, remembers being appalled by what he was seeing: "I would go in patients' rooms and you could tell that they hadn't had a bath," he says. "They weren't being taken care of."

In 1983, Morrison organized a team of healthcare providers to open Ward 5B, an in-patient AIDS special care unit at San Francisco General Hospital. The medical team on the unit encouraged patients to make their rooms like home, and allowed families and partners to visit whenever they could. They comforted patients by touching them, and would even sneak in pets.

5B was the first unit of its kind in the nation — and it became a model for AIDS treatment, both in the U. S. and overseas. Now, a new documentary, called 5B, tells the story of the doctors and nurses who cared for patients on the ward.

Dr. Paul Volberding was a doctor on Ward 5B and went on to co-create an AIDS clinic at the hospital, which was one of the first in the country. He emphasizes how critically ill the patients on the unit were.

"These were people that were really, sometimes literally, dying when they came into the hospital, so whatever we could do to make them more comfortable was really important," he says.

The work on 5B was emotionally draining, and death was a constant reality. Still, Volberding describes his time there as a "blessing."

It really put in perspective the fact that life is on a continuum, and death is just part of that continuum. I saw people have beautiful deaths, and that was wonderful." - Cliff Morrison

"The care that patients were getting was really special and very different than the rest of the hospital," he says. "It was always a complete privilege to do this work."

Morrison adds, "I had some really wonderful experiences with people in their passing, and they taught me a great deal. It really put in perspective the fact that life is on a continuum, and death is just part of that continuum. I saw people have beautiful deaths, and that was wonderful."


Interview highlights

On how everyone who came into the hospital with the virus in the early 1980s died

Volberding: I don't think most people can understand today how devastating a disease AIDS was back in those days. ... It's just impossible to appreciate that HIV, if it's untreated, kills essentially 100 percent of the people. It's much worse than Ebola, much worse than smallpox. So, everyone died. Every patient that was sick enough to come to us to look for medical care would die from this disease. And people knew that there was a lot of education to be done, but they knew that this was a really bad situation.

On how they didn't know if what they were seeing was infectious when the first patients came in with the rare cancer, Kaposi's sarcoma, which ended up being one of the symptoms of the as-yet-unknown AIDS virus

"It was always a complete privilege to do this work," Dr. Paul Volberding says of treating patients on 5B.
Courtesy of Paul Volberding

Volberding: I wasn't worried about catching anything from the patients because that's not what I expected in taking care of cancer patients. I didn't expect to be worried about anything, and wasn't really. But the care that the patients were getting was pretty spotty in the hospital. I think that was one of the things that led Cliff and the others to really put together the nursing unit.

Morrison: In my experience, in already what had been seen and what I was hearing from the specialists around us with the information that was coming out, was that I wasn't at risk providing care to people by touching people. And everybody around us was saying, "Oh you're just being cavalier. This is really not what you should be doing, and you're giving the wrong message." And our response always was, "We're giving the right message." So we were dealing with a lot of hysteria and misinformation and just outright discrimination, I think, very early on.

On expanding the hospital's family and visitors' policy for Ward 5B

Morrison: We also noticed right away ... that we needed to really look at issues around family and visitation, because healthcare was very rigid and was really stuck on this whole idea [regarding] visiting hours that it could only be immediate family. Most of our patients didn't have family around. ... We almost immediately began talking about, in all of these regular meetings and sessions that we had, that maybe we needed to start letting our patients tell us who their family was, and that we needed to kind of move away from this whole idea of traditional family and biological family.

Volberding: I think that the patients were so sick — and they were so in need of support — that the idea of visiting hours and keeping people away didn't make sense.

Morrison: There were times when they were alone in their rooms and they always needed something. They were very anxious. It not only made them more comfortable, it made our lives a lot easier having people that were there in the rooms most of the time.

On the bond that existed among 5B staff members

Volberding: It was a family. The physicians, the staff and the clinic and in the inpatient unit — we all worked so closely together because those were our patients. As physicians, those were our patients. And we were on the unit every day seeing our patients, and it was, again, a very special group of people.

On how the homophobia of the time influenced patient care

Appalled by the way patients with AIDS were being treated by hospital personnel, nurse Cliff Morrison decided to create a dedicated unit within San Francisco General Hospital that would emphasize compassionate care.
Verizon Media

Morrison: That was, I think, probably the most glaring reality of the situation. Even in San Francisco — which, even at that time was considered the gay mecca — gay people had very established careers and homes and families, and yet all of that started coming apart. And it really was centered around homophobia. There were people in the hospital that should have known better. ... There was a group of nurses that basically said that what we were doing was crazy and that we were putting all of them at risk. It went before the labor board — but that was all homophobia.

On the evolution of AIDS treatment

Volberding: In 1987 we began to have some drugs that were doing something. ... And then, by 1996, the so-called triple therapy was developed and that was really a turning point in the epidemic. We could suddenly start seeing some of our patients actually get better — not just die more slowly, but actually get better.

The change from the early days and seeing the drugs being developed and now seeing that this is truly a chronic condition is, I think, one of the most amazing stories we'll ever hear from in medicine. - Dr. Paul Volberding

And some of those people are still alive today. The effort since '96 has been to take those potent drugs and make them less toxic and more convenient. Today, we treat this very typically with what we call single tab regimens — one pill taken once a day that contains two, three or even four drugs — all in the same pill. Many of my patients don't have any side effects at all from the medicines they're taking. The change from the early days, and seeing the drugs being developed, and now seeing that this is truly a chronic condition is, I think, one of the most amazing stories we'll ever hear from in medicine.

Amy Salit and Mooj Zadie produced and edited the audio of this interview. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.

Copyright 2019 Fresh Air. To see more, visit Fresh Air.

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. In the early years of the AIDS epidemic, when the disease didn't have a name and no one knew what caused it or how it was spread, my guests, Dr. Paul Volberding and nurse Cliff Morrison, were taking care of people who were infected, very sick and dying.

Now they're featured in a new documentary titled "5B" about Ward 5B, the first inpatient special care hospital unit for treating people with AIDS. The unit opened in San Francisco General Hospital in 1983, the year that HIV was identified as the cause of AIDS. It became a model for AIDS treatment in the U.S., as well as other countries.

Nurse Cliff Morrison created and then oversaw Ward 5B, where he insisted on emphasizing compassionate care, trying to address patients' emotional, as well as medical, needs. He became assistant director of nursing at the hospital. Dr. Paul Volberding was a doctor on the unit and went on to co-create an AIDS clinic at the hospital, which was one of the first such clinics in the country. He became well-known for his work treating patients, as well as for his research into retroviruses like HIV and for the development of drugs to treat the virus.

The film "5B" is playing in select theaters and will later be available on demand and streaming.

Dr. Paul Volberding, Cliff Morrison, welcome to FRESH AIR. Thank you for coming. The documentary is terrific, and thank you for all the work you've done over the years. I want to start at the beginning of the AIDS story for you. Can you each describe to us the first AIDS patient that you treated before AIDS or HIV was identified?

PAUL VOLBERDING: I started working at San Francisco General Hospital as a faculty member on July 1, 1981, and I was seeing the patients in the hospital that had cancer. And I saw my first AIDS patient - a 22-year-old man with Kaposi's sarcoma - a striking case well before AIDS was - the term was coined.

GROSS: Kaposi's sarcoma was very rare. It wasn't rare for people with AIDS, but before AIDS, it was very rare. You get purple lesions over your body. Did you know what you were treating, and did you have any idea what was...

VOLBERDING: Well, I...

GROSS: ...Causing this cancer?

VOLBERDING: Sure. Quick answer is I didn't have a clue. I had just finished my training in cancer medicine - oncology - and I decided not to bother studying that tumor for my board exams because it was so rare in the U.S. It was really never seen by oncologists. It was a disease occasionally seen in very elderly Jewish men, and it was a - almost a benign condition. So seeing it in a 22-year-old and seeing how sick he was was unheard of.

GROSS: What was the first time that you each realized what you were seeing was part of a larger pattern - it was part of an epidemic?

VOLBERDING: Well, for me, I think it was a couple days later, when the first newspaper report on Kaposi's came out. Larry Altman in The New York Times wrote a very short story that was on July 3 of 1981. I saw it and realized that my patient had what he was talking about, and it was just after the first few cases of PCP that pneumonia were reported by the CDC. I didn't link those two things at first, but I knew that, you know, this patient that I had was so unusual. And then to know that - to realize that there were other people with this condition - it was clear right from the start that something new was happening.

GROSS: Once it was clear that there was an AIDS epidemic and that more and more people were getting this disease, what was the understanding in the hospital like before this special AIDS unit was set up? What was the understanding in the hospital about what nurses and doctors should be doing to protect themselves from getting it and to protect other patients and other people in the community from getting it?

CLIFF MORRISON: You know, we started meeting, I think, all of us on a regular basis very early on 'cause we knew that we had to share information. And there was so much misinformation. And I think it's one of the best things that we did right away - was we started having these meetings. It was pretty sketchy in the beginning.

VOLBERDING: Right. Right. I don't think we, at first - we certainly weren't, at first, worried. I wasn't worried about catching anything from the patients 'cause that's not the - what I expected in taking care of cancer patients. I didn't expect to be worried about anything and wasn't, really. But the care that the patients were getting was pretty spotty in the hospital. I think that was one of the things that led Cliff and the others to really put together the nursing unit.

GROSS: The point is made in the documentary that early in the AIDS epidemic, people were afraid to go into the rooms of people with AIDS and that even breakfast trays would pile up because everybody was afraid to go in and just, like, deliver the meal. Cliff, what were some of the other problems in treating and giving AIDS patients good, compassionate care, problems that led to the creation of 5B?

MORRISON: Staff were refusing to provide services or care to patients - not only nurses, but I think the auxiliary staff, the support staff. And I would go in patients' rooms, and you could tell that they hadn't had a bath. They weren't being taken care of. Their beds were dirty. Oftentimes, they were soiled. In many situations, they were just too sick to even kind of respond to it. The ones who were were completely humiliated.

And, you know, as a nurse, I was appalled by what I was seeing. And like Paul, in my experience, in already what I'd been seeing, in what I was hearing from the specialists around us, with the information that was coming out - was that I wasn't at risk providing care to people by touching people.

And everybody around us was saying, oh, you're just being cavalier. This is really not what you should be doing, and you're giving the wrong message. And our response always was, we're giving the right message. So we were dealing with a lot of hysteria and misinformation and just outright discrimination, I think, very early on.

GROSS: Cliff, were there other reasons you wanted to start a separate unit for AIDS patients?

MORRISON: Yes. Almost from the beginning, there had been discussion about, we need to separate; we need to put these patients somewhere else. And it was clear to me that it was for all the wrong reasons. And it was only later when we had more and more patients - and it became clear to me that there was no way that we could keep up with coordinating the care, you know, on the general units. And so I went to the then-director of nursing and said, I think we can rethink this, but let's do it for the right reasons.

GROSS: What are some things you wanted to do different in terms of how the patients were treated, compared to how they were being treated in the general hospital?

MORRISON: I just didn't like the approach. I didn't like where we were going. You know, I've always been a person that likes touching people. I think it's one of the reasons I went into health care and became a nurse. And I wanted a situation where we could touch, embrace, be a part of.

I was really looking more - you know, at the time, in nursing, we had this approach, which was called primary nursing. And it was, like, an all-our-own staff that would be able to coordinate and provide care. One nurse would be responsible for coordinating the entire care and working with the medical team so that you didn't have all these different people coming in and dealing with the different aspects of care. And that was really what I wanted to do and focus on.

We also noticed right away - and it was very hard for me because I had a lot of friends already I was seeing coming in with this, that we needed to really look at issues around family and visitation because health care was very rigid and was really stuck on this whole idea that if...

VOLBERDING: Visiting hours.

MORRISON: Visiting hours - that it could only be immediate family. And most of our patients didn't have family around and...

GROSS: Well, some of your patients - their family didn't even want to associate with them.

MORRISON: That's right. They didn't. We almost immediately began thinking about and talking about in all of these regular meetings and sessions that we had that maybe we needed to start letting our patients tell us who their family was and that we needed to kind of move away from this whole idea of traditional family and biological family. One of the early pieces in the film, Alison Moed is talking about the two guys that she was working with in one of the special units...

GROSS: She's one of the nurses.

MORRISON: Yes, yes, Alison Moed was one of the nurses on the unit. And she was talking about how they set up the room like their home, and she used the example - they brought in champagne glasses and drank water out of them. I remember they brought in paintings and rugs and...

VOLBERDING: Bedspreads, yeah.

MORRISON: ...Bedspreads and - you know? And I remember walking into that room, and I was like, wow, this is how it should be. Yes, he was very sick. But what it did more than anything else was - I think it allayed some anxiety, but it also made them more comfortable. And when you walked in, you just didn't feel that sterile, institutional feel that hospitals have. But all of that was things that hadn't been done up until that point.

GROSS: Did you both think that visiting hours should be altered or eliminated so that there'd be visiting anytime anybody wanted to?

VOLBERDING: Well, I think that the patients were so sick and they were so in need of support, the idea of visiting hours and keeping people away just didn't make sense. The doctors really loved going on 5B. I think we saw that the care the patients were getting was really special and very different than the rest of the hospital and really a model for the rest of the hospital. So I think we totally understood and supported what was going on. It was - also ended up being a focus for volunteers - would come in and help, so it was really a very loving place.

MORRISON: You know, having visitors there often made our jobs easier because so many of the visitors were closely associated. They were family of choice. And they were there. We couldn't be with the patients all the time. There were times when they were alone in the rooms, and they were - you know, they always needed something. They were very anxious. It just - it not only made them more comfortable. It made our lives a lot easier having people that were there in the rooms most of the time.

VOLBERDING: It also is the case - and I think the film makes this clear - that these people were really sick. I don't think most people can understand today how devastating a disease AIDS was back in those days. These were people that were really sometimes literally dying when they came into the hospital, so whatever we could do to make them more comfortable was really important.

GROSS: But these were deaths that entailed a lot of suffering. These were patients who had trouble breathing when they had pneumocystis pneumonia. There were night sweats. There was chronic diarrhea, severe headaches, brain cancer often, blindness. I mean, there were just, like, horrible symptoms and a whole constellation of them.

VOLBERDING: One of the things that I was struck by was - so people develop some of these infections and cancers at different stages of their disease. And when the T cells, the immune cells, were essentially totally gone, they especially were getting CMV retinitis, cytomegalovirus retinitis. They turned blind. And at the same time, the HIV would cause them to be demented. And so it was not uncommon at all to see these terrible, demented blind people being led around by their partners - just the most amazing, horrible scenes that you can imagine.

GROSS: If you're just joining us, my guests are Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS. And this was at San Francisco General Hospital. The unit was created by Cliff Morrison in 1983. We're going to talk more about the early years of the AIDS epidemic and my guests' work in caring for people in the early days of the AIDS epidemic after we take a short break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. And if you're just joining us, I have two guests. My guests are Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS. And the emphasis was on compassionate care. Morrison set up the unit in 1983 at San Francisco General Hospital. Dr. Volberding at the time was the - he was an oncologist and was head of the AIDS clinic at the hospital, so they both worked in this unit treating the patients. Dr. Volberding went on to become a prominent for his work with AIDS patients and for his research on retroviruses like HIV and for medical treatments for retroviruses like HIV.

I want to get back to the idea of trying to keep the patients as comfortable as possible. I think there were times you allowed them to bring in pets.

MORRISON: It was. And again, that - you know, that was something that was, I think, up until that point completely, you know, out of the question. Where I work now, we've just recently started doing it. Back then, it was completely unacceptable. San Francisco General never had a policy for pets being able to come on the unit. One of the nurses in the film kind of let that cat literally out of the bag...

GROSS: (Laughter).

MORRISON: ...You know, when he said that in the film. And it's - but it is true. You know, people...

GROSS: So you'd, like, let people sneak them in.

MORRISON: We'd let people sneak pets in. You know, I'm a pet lover. I've always had pets. I always had dogs, and now I have cats. And if I were sick and if I knew I was dying, I would really want to at least see my pet, even if I couldn't touch it. And people were saying that. You know, my little dog always - he's - you know, he's not going to hurt anything. He'll - you know? And that's what they were doing. Visitors and nurses were, you know, sticking the little dogs under their coats and bringing them in and, you know, letting them visit with the patients.

VOLBERDING: I've got pets, too, and I would be afraid that my cats would be missing me. So (laughter), having them there would be good for them as well as for me.

GROSS: The film shows how a lot of medical workers early on were basically wearing spacesuits just to go into the room of a patient with AIDS to prevent contamination. And what were the rules that you wanted your doctors and your nurses to follow - and I'll ask you both this - when you and where they were dealing with AIDS patients early in the epidemic when you still didn't even know how the virus was spread? Perhaps it could have been spread, you know, through the air, - like, you didn't know - through a cough or sneeze. You didn't know yet.

VOLBERDING: Well, at first we didn't even know there was a virus. So I always felt that it was good and very positive to touch patients. Cliff and I totally agree with that, I think. And I think it helped make the point, you know, we were being photoed a lot and filmed a lot because the media was all over this story. And I thought it was important that we did show that you could touch, you could hug patients without being afraid. There obviously did come a time when we - for me, it was at the end of 1982 when it became obvious, I think, that this disease was being caused by a virus and that we didn't know the virus, we didn't know how it was spread.

But I don't think there was ever a fear that it was easily spread because we'd seen so many patients by then. And those of us without other risk factors, we're still healthy. So there was fear, for sure. But it was never really a fear of kind of getting this from the air.

GROSS: In the movie, you talk about how, early in the epidemic, before you really understood how the virus was spread, you and your wife were starting to have children. And she worked at the hospital, too, and she treated AIDS patients, too. She's a doctor. And I think you had two children in the mid-'80s, or early in the epidemic, and you were terrified that you would somehow infect them. Can you talk with us about that?

VOLBERDING: Well, Molly Cooke is my wife and was a physician at the hospital, as well. She worked, actually, very closely with Merle Sande and had seen AIDS patients before I did, in retrospect. And there - again, at the end of 1982, we'd seen a lot of patients. We'd seen a lot of death. And we knew how horrible this disease was, and we'd learned from a baby that was transfused at birth who died of AIDS quickly that this must be a virus. Viruses are really the only thing that's transmitted by blood transfusions. And so we knew that we were dealing with an infectious disease.

And I was really terrified. And Molly was, too. And we've got a good relationship. We can talk about things. And we just - we never talked about it, but we'd never talked about our fear. It was just too - it was too fearful. And our oldest son was born just two weeks before I saw my first patient. My second son was born in 1984. Our daughter was born in 1987. So all through those years, and until we had the blood test for the virus, my nightmare was that I had given it to my kids.

I don't - you know, I didn't think about how that could have happened. And I didn't have a nightmare that I had it, but that I had given it to my kids. So there was a lot of fear that we really couldn't talk about easily.

GROSS: One of the nurses depicted in the film had a needle stick injury while doing a medical procedure, and she got AIDS and continued to be a nurse on that unit. How often did that happen at the hospital?

VOLBERDING: Well, needle stick injuries are less common now than they were, but they were quite common. My wife, Molly, was helping me one day in clinic and volunteered to do a spinal tap, an LP that I was supposed to do. She did it and got a needle stick injury from this spinal needle, which is a big needle. And she didn't get HIV, fortunately, but there was a period of real anxiety until she knew she wasn't infected.

GROSS: My guests are Dr. Paul Volberding and nurse Cliff Morrison, two of the people featured in the new documentary "5B" about Ward 5B, the first special care hospital unit for people with AIDS. It was created by Morrison at San Francisco General Hospital in 1983. After we take a short break, they'll talk more about caring for people with AIDS when they knew it was a death sentence and losing a generation of gay men to the epidemic. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Dr. Paul Volberding and nurse Cliff Morrison about the early years of the AIDS epidemic, when they worked at the first special care hospital unit for patients with AIDS. Their emphasis was on compassionate care. The unit was created by Morrison at San Francisco General Hospital in 1983 and became a model for other units in the U.S., as well as other countries.

Now that unit, known as Ward 5B, and the people who worked in it are the subjects of the documentary "5B." It's opened in select cities and will later be available on demand and for streaming.

Dr. Paul Volberding became prominent for his work with HIV/AIDS patients, as well as for his research into retroviruses like HIV. Cliff Morrison now manages an inpatient program in the Bay Area for the developmentally disabled and those suffering from mental illness.

Paul Volberding, you're a doctor. Cliff Morrison, you're a nurse. You both were on the special AIDS unit at San Francisco General Hospital. What interactions did you have with each other, and what are the things you wanted to share with each other from your perspectives as doctor and as nurse?

VOLBERDING: I loved seeing the movie because I hadn't seen Cliff in a number of years. I've seen some of the other nurses pretty frequently 'cause I still go to the San Francisco General Hospital occasionally for meetings and the like. But you know, it was a family. The physicians, the staff in the clinic and in the inpatient unit - we all worked so closely together because, you know, we had - those were our patients. As physicians, those were our patients.

And you know, we were on the unit every day, seeing our patients. And it was a - again, a very special group of people. It's - you get the sense in the film that the people that wanted to work there - I often said that they volunteered to work there. They did volunteer to work there, but they obviously weren't volunteers. But it was an amazing group of people.

GROSS: Cliff, let me ask you this. You know, most of the people early in the epidemic who had AIDS were homosexual men, and this was an era when, you know, being gay was really villainized in the U.S. Politicians - in some ways, things haven't changed, but - I mean, a lot has. Some things haven't. But politicians, evangelical leaders were so anti-gay. And so how do you think homophobia combined with the fear of the epidemic to produce an especially kind of combustible, paranoid view of both gay people and people with AIDS?

MORRISON: That was, I think, probably the most glaring reality of the situation. There was - even in San Francisco, which was, even at that time - was considered the gay mecca. You know, gay people had very established careers and homes and families, and yet, all of that started - you know, started coming apart. And it was - and it really was centered around homophobia.

You know, there were people in the hospital that should've known better. If you saw the film, you saw that - you know, the situation where there was a group of nurses that - you know, that basically said that, you know, what we were doing was crazy and that we were putting all of them at risk. And you know - and it went before the labor board and - but that was all homophobia. I mean, that's what that was about.

VOLBERDING: I had a patient who was in a loving relationship. If it was today, they would have been married. But they were together. They had been together for years. And when my patient got sicker and sicker and died, suddenly, for the first time, his parents descended on the hospital. They took his body and took it to the East Bay and wouldn't tell his partner where he'd been buried. And that's - you know, that wasn't AIDS. That was homophobia that just distorted things so badly.

GROSS: Early in the epidemic, before you knew much about what it was and you'd seen - but you'd seen a lot of patients - both of you - you'd seen a lot of patients who had AIDS and who had died of AIDS - when new people came in, did they know that at that point in the epidemic, AIDS was basically a death sentence? Had they seen it around them? Did they already know, or did you have to either tell them or hide from them the truth of what their future was going to be?

VOLBERDING: Well, I saw a lot of patients in those days. And to a person, they would say, I'm going to - I know that the odds are bad, but I'm going to beat this. And over and over - and, you know, it's just impossible to appreciate that HIV, if it's untreated, kills essentially 100% of the people. It's much worse than Ebola, much worse than smallpox. So everyone died. Every patient that was sick enough to come to look for medical care would die from this disease. It was - and people knew that. There was a lot of education to be done, but they knew that this was a really bad situation.

MORRISON: And we were always, you know, right up front with, you know, this is the odds. This is what you're dealing with. This is the situation. And for a lot of them, they kind of came around to realizing that they were in a terminal state.

And some of the things that I personally learned out of this was how to be with people at the end of their lives. And you know, as terrible as that can sound, I'm able now, at this point in my life, to look back and put it in perspective and realize that I had some really wonderful experiences with people in their passing. And they taught me a great deal, and it showed me - it really put in perspective the fact that life is on a continuum, and death is just part of that continuum.

And I saw people have beautiful deaths. And you know - and that was wonderful. It hurt. I cried. I went through all of that. But it was the people that fought and struggled right up to the end and wouldn't let go - in the film, you see staff and families say, it's OK.

VOLBERDING: Time to go. Time to go. Yeah.

MORRISON: Let go. Let go. I don't know how many times we said those things.

GROSS: Dr. Volberding, you mentioned that you were watching young people die in large numbers, which is very uncommon unless you're talking about war. But you were both young at the time.

VOLBERDING: These patients were - yeah. These patients were our age.

GROSS: Exactly. Exactly.

VOLBERDING: You know, I was 31 when I saw my first patient, and their parents were my parents' age. So the sense of kind of being together in this was something that was really a striking part of this early epidemic.

GROSS: And Cliff, for you as a gay man, and since gay men were so at risk, you were living with the epidemic at work, but your community of friends was probably living with the epidemic, too. So, like, there was no...

MORRISON: Yeah.

GROSS: There was no safe place where you could, like, get away.

MORRISON: Yeah, you're right. There was no escaping it. We had to learn to deal with it.

GROSS: You say in the movie that you don't have friends your age because they all died.

MORRISON: You know, that's true. I mean, it wasn't completely exclusive, but for sure, most of my friends, you know, died that were my age. And I mean, I look around me today, and when we did the premiere of this film at the Castro in November, I took with me my two best friends, who are 20 years younger than me. And you know, I can jokingly now say, well, the advantage is that now that I'm older, I have friends that are 20 years younger, and they can take care of me. But that - it's also the reality - is that there are very few of my peers, contemporaries from that period that are with us today.

VOLBERDING: One of my early physicians that I hired was John Stansell, a gay man from - came from Washington, D.C. And he said that he had lost his entire circle of friends to this disease. So the loss - I'm surprised there's not more PTSD in the community. I don't see it - real evidence of it, but there was so much loss.

GROSS: Let me reintroduce you both. If you're just joining us, my guests are Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS, and this was at San Francisco General Hospital. The unit was created early in the days of the epidemic in 1983, and Cliff Morrison created the unit. We'll be right back after a break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. And if you're just joining us, I have two guests, Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS. This is a unit that became a model for other hospitals. The emphasis in this unit was on compassionate care.

Morrison set up the unit in 1983 at San Francisco General Hospital. Dr. Volberding at the time was an oncologist and was the head of the AIDS clinic at the hospital. Dr. Volberding has gone on to become prominent for his work not only with AIDS patients, but for his research on retroviruses like HIV and for medical treatments for those viruses.

The HIV test became available in - what year was it?

VOLBERDING: 1985.

GROSS: Did you both take it right away?

VOLBERDING: I took, actually, an early version that J. Lee had prepared once the - once he had isolated the virus. He developed an early version of the test, and I was an early volunteer because I had learned by volunteering for an earlier study that my T cells were not quite normal. And I didn't tell anyone about that. I didn't tell even my wife. So I was very eager to learn.

And when I found that I was negative, it was an immense relief, not just because I knew I didn't have the virus, but that everything that we'd been saying about the safety of taking care of patients, touching patients - we could then really say that very, very strongly because we knew that this wasn't a easily transmitted virus.

MORRISON: Yeah, and I was kind of in the same situation. And some of my blood work started coming back, looking really ridiculous. And I was like, oh, well, you know, I know what this is all about. And in my situation, I found out years later that the reason was because I had developed chronic B-cell leukemia, which, you know, Paul can tell you, is something I'm - you know, I'm going to live with and hopefully will probably just die of old age or meanness at 90.

(LAUGHTER)

MORRISON: But yeah, I mean, you know, my blood work was a little off because I was already, you know, in that situation. But with, you know, something like what I have, you - it's chronic. You just live with it for the rest of your life. And if you take care of yourself, you'll be OK.

GROSS: So once the test became available and people started testing positive but didn't have symptoms of AIDS, Paul Volberding, what did it tell you about the trajectory of HIV?

VOLBERDING: Well, it's - you know, it's so strange because most viral infections, you test - if you have an antibody to it, means you're immune - you know, if it's measles or whatever. So it's a very unusual situation to have an antibody test that doesn't mean you're immune. In fact, it means you're infected. This is a chronic infection, and the immune system doesn't stop it, even though you develop antibodies. The infection continues and progresses.

So at first, we thought, well, there are a lot of people that are antibody-positive that are healthy. And for a while that - we used the term worried well. They're worried, but they're well or healthy zero posited. This was another thing we said for a while.

But gradually, as we kind of tracked those people - and there were various epidemiology studies being conducted in the country - we realized that they were all progressing, that their T cells were all declining. And then the reality that hit us was that this was a massive epidemic, that all the people that were worried well were - had reasons to be worried.

GROSS: So as the epidemic got larger and the number of your patients grew, how did you each deal with burnout? - 'cause part of what you were about was giving special care to the patients - you know, treating them compassionately, spending - Cliff, for you as a nurse - spending time with them, catering to their needs emotionally, as well as medically. So what about your own burnout? I mean, and I say that knowing that so many, you know, doctors now just, like, you know - without a special epidemic, doctors deal with burnout. And that's - that probably has something to do with the way the health insurance industry and payments work. But burnout is a real issue, and it must have been especially difficult for you.

MORRISON: You know, it was. And yeah, ultimately, I did burn out. But I have to tell you - speaking for myself, but I also think that I can speak for a lot of other people - we didn't burn out because of what we were doing with our patients. We didn't burn out because of the work that we were doing. I can speak for myself. I burned out because of the bureaucracy and the politics of AIDS and, you know - and just kind of felt like I was - you know, I reached a wall at some point.

And I can only imagine - I remember a number of times, Paul, seeing you, where you looked like you could just rip somebody apart. You were so exasperated by what was going on around us.

VOLBERDING: I remember a time - I don't remember the exact year, but mid-'80s - where, in my clinic, a lot of the - we were dealing with the same thing - the death and, you know - all the time. And a lot of our physicians were gay themselves. Some of them were developing symptoms. Some of their partners were dying of AIDS. And there came a time when we were just kind of on each other's cases all the time. People would be attacking each other. And we're - you know, we're all nice people, but we found ourselves really manifesting this anger.

And Donald Abrams found a group in Marin - Center for Attitudinal Healing - that he thought might help us. And they came in and organized volunteer small group sessions and taught us. It was kind of pop psychology, but it was - I found really useful. I think of it to this day, and I think it really helped us have a better perspective on what we were going through and our own ability to be peaceful in the middle of this war.

GROSS: Cliff mentioned that he thinks his burnout was a result, really, of the bureaucracy and politics that he had to deal with. And - well, I should say here - in the world of AIDS, President Ronald Reagan is famous for not having mentioned the epidemic which was killing thousands and thousands of people - not having mentioned it until 1987...

VOLBERDING: '87, right.

GROSS: ...Six years after the epidemic started. And then he created an AIDS commission to advise him on AIDS. I think it's fair to say you were concerned that there were no AIDS specialists or AIDS researchers, doctors or nurses dealing with AIDS who were represented on the commission.

VOLBERDING: Well, that's true. Yeah, I mean - and there were, you know, people from the military background and the rest. So there was a striking lack of people that were really actually working with this epidemic.

GROSS: Let me reintroduce you both. If you're just joining us, my guests are Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS, and this was at San Francisco General Hospital. The unit was created early in the days of the epidemic in 1983, and Cliff Morrison created the unit. We'll be right back after a break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. And if you're just joining us, I have two guests, Dr. Paul Volberding and nurse Cliff Morrison. They're both featured in the new documentary "5B" about the first special care hospital unit for people with AIDS. This is a unit that became a model for other hospitals. The emphasis in this unit was on compassionate care.

Morrison set up the unit in 1983 at San Francisco General Hospital. Dr. Volberding at the time was an oncologist and was the head of the AIDS clinic at the hospital. Dr. Volberding has gone on to become prominent for his work not only with AIDS patients, but for his research on retroviruses like HIV and for medical treatments for those viruses.

Dr. Volberding, you've done research on retroviruses and on developing antiretroviral drugs. What would you say is the state of the art now in terms of what's medically available? - like, you know, medicines that are available for treatment and for prevention.

VOLBERDING: Sure. It's a stunning story, you know, and going back to the days when we barely knew that it was an infection and watching all of our patients die. In 1987, we began to have some drugs that were doing something. AZT, although it was controversial and didn't do much, was the first of the drugs. And then by 1996, the so-called triple therapy was developed, and that was really a turning point in the epidemic. We could suddenly start seeing some of our patients actually get better - not just die more slowly, but actually get better. And some of those people are still alive today.

The - and the effort since '96 has been to take those potent drugs and make them less toxic and more convenient. Today, we treat this very typically with what we call single-tab regimens - one pill taken once a day that contains two, three or even four drugs all in the same pill. And so it's - and many of my patients don't have any side effects at all from the medicines they're taking. So the change from the early days and seeing the drugs being developed and now seeing that this is truly a chronic condition is - I think it's one of the most amazing stories we'll ever hear from - in medicine.

GROSS: Cliff, you started the special unit for patients with AIDS at San Francisco General Hospital in 1983. What year was that unit shut down and why?

MORRISON: The unit stayed open, I think, until 2003.

VOLBERDING: That's what the movie said (laughter).

MORRISON: And I wasn't sure. So it stayed open, actually, a lot longer than I thought. I had gone back. I was in and out of there quite a bit. And I remember I'd gone back at some point for some meeting or something and was surprised. I was like, wow, it's, you know - it's still here. And I remember going up on the unit and the head nurse telling me that, well, only a few people here are people actually with HIV or AIDS. And it was mostly oncology, so it transitioned to oncology. And then I think the unit just essentially closed just a few years before they built the new hospital, which was one of the reasons we were able to use that old space in the film.

GROSS: So...

VOLBERDING: It closed because we didn't need it...

MORRISON: Yeah.

VOLBERDING: ...Anymore because the treatments were working.

GROSS: I find it so remarkable that on TV now, there's actually ads for a drug that's - you take once a day in an attempt to prevent getting the virus. And in the ad, you see gay men talking about using this, and I think they even talk about using it before, like, intimate encounters or sexual relations. I forget how they put it. But when you compare that to when people wouldn't even speak of the epidemic and you'd never see gay people on TV - certainly not in commercials and advertisements - it's really such a change.

VOLBERDING: It's a different world. But you know, the - having a medicine to take to prevent HIV infection and also knowing that the medicines we use to treat the virus prevent transmission - you know, it's - we have the tools to stop this epidemic, and it's just an amazing story.

GROSS: The drug I was referring to is called Truvada for PrEP, PrEP standing for preexposure prophylaxis. So how effective do researchers say that drug is in preventing getting HIV?

VOLBERDING: Hundred percent effective. Basically, if you take the drug on a regular basis, very large clinical trials have shown essentially no one gets infected. So it works if you take it. It's all about...

GROSS: But you have to take it. You have to take it every day.

VOLBERDING: You have to take it. You have to take it every day, and you have to have access to it. You have to be able to afford it because many insurance programs don't pay for it. So there are barriers, but, you know, it's an amazing tool.

GROSS: So is there anything either of you would like to say before we have to wrap up?

MORRISON: Yeah, I would just really like to say that it was a wonderful opportunity to get to work on this film. It really turned out so much better than any of us could imagined. I've never been as pleased and impressed to be part of something as I was this.

VOLBERDING: I would add that people have said, you know, it's - you know, you've had such a horrible job. You've worked with this horrible epidemic. And I have to say it's been - and I'm sure I'm speaking for many other people that have worked with this epidemic - that it's been a complete blessing. This has been a privilege to never once wonder whether what I was doing was important. We knew it was important - and again, not just me.

So - and that - and the sense that we can help people even if we can't cure them, that even in the early days - that we could offer reassurance when it was possible, we could help people be more comfortable, even though they were progressing - those are lessons that, you know, will stay with us. But it was always a complete privilege to do this work.

GROSS: Paul Volberding, Cliff Morrison, thank you so much for talking with us, and thank you so much for the work you've done.

VOLBERDING: Thank you.

MORRISON: Thank you.

GROSS: Dr. Paul Volberding and nurse Cliff Morrison are featured in the new documentary "5B." It's playing in select theaters and will be available on demand and for streaming later this year.

Tomorrow on FRESH AIR, we meet Tracy Edwards, who in 1989, led the first all-female crew in the Whitbread Round the World Yacht Race, a grueling 33,000-mile, nine-month-long competition. Journalists predicted this crew wouldn't even finish. The new documentary "Maiden" is about that voyage. I hope you'll join us.

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GROSS: FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham. Our associate producer for digital media is Molly Seavy-Nesper. Roberta Shorrock directed today's show. I'm Terry Gross. Transcript provided by NPR, Copyright NPR.