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II Encountering the AIDS Epidemic

First Patient in San Francisco Diagnosed with Kaposi's Sarcoma

Hughes

When did you first encounter a patient with what we now know to be HIV disease?

Groundwater

I think it was the fall of 1980.

1981 was the--

Hughes

1981 was when the epidemic was recognized.

Groundwater

Right. So it was in 1980, I think, probably about September, October. The patient was a guy who worked for BART [Bay Area Rapid Transit], and he had retired because he was fatigued, and he was just too weak to work. Seeing him at that time, he was thin, but didn't look terribly ill. He had a few little purple lesions on his skin at that point. I have pictures of him; I probably should have pulled some of those pictures out. Maybe I could find them.

Lesions and Multiple Biopsies

Groundwater

Anyway, he had probably five or six two- or three-millimeter purple bumps on his skin, and he also had enlarged lymph nodes on the right side. I remember the primary physician, Richard Hamilton, who referred him had noticed these nodes and had biopsied the nodes. The biopsy report indicated hyperplasia without any specific diagnosis. I biopsied one

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of the purple bumps on his body at that time, I thought they must be something serious.

Hughes

Why did you think that?

Groundwater

They just didn't look like anything benign that I knew of. They didn't look like just angiomas, for example, that so many people get; cherry angiomas that sometimes can look really purplish. These lesions were somewhat poorly defined, and they just had the look of malignancy to me. So I suspected from the beginning there was something serious going on, certainly with these nodes, as well as the purple bumps.

The primary physician kind of pooh-poohed it; he didn't think it was terribly serious. He thought it was a viral sort of thing or something like that. And the lymph node biopsy showed only hyperplasia.

So I sent the biopsy of a purple bump off to a pathologist [Herman Pinkees?] who read it as an angioma, really of no significance. But I felt that it couldn't be just an angioma.

So I started sending the biopsy specimen around to different pathologists. I think one of them read it as systemic angioendotheliomatosis, which is just a benign entity, a proliferation of blood vessels, in a slightly different way. I sent some of the lymph nodes around too, and kept getting back pathology reports of benign hyperplasia.

Kaposi's Sarcoma Diagnosis

Groundwater

But finally, I think it was Dick Sagebiel, a dermatopathologist over in the melanoma clinic at Mt. Zion, who was the first one who made the diagnosis of Kaposi's sarcoma [KS] on these lesions.

We sent it to Bernard Ackerman in New York also, who confirmed the diagnosis of Kaposi's sarcoma.

Hughes

Had you ever seen a case of--

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Groundwater

I had never seen a case of Kaposi's sarcoma, but I'd read about it in the medical literature. It typically occurred in Jewish Mediterranean-born men, and typically they had it on their legs, and they were treated with x-ray, and the lesions would clear. Rarely, it would go on to internal lymphoma, and when patients did develop lymphoma internally, for the most part, they didn't die of the disease. It was just part of their life, but it wasn't fatal to them.

Initial Management of the Patient

Groundwater

So we had this young gay male who had these purple bumps that had finally been diagnosed as Kaposi's sarcoma. And he had adenopathy in his armpit, and ultimately we were able to confirm a diagnosis of Kaposi's sarcoma of the lymph nodes, too.

Initially, I had sent the patient to an oncologist, Kathleen Clark, to evaluate him, because of the swollen lymph nodes, and the oncologist was unable to make a specific diagnosis. She felt that the lymph nodes were benign hyperplasia, and that there was nothing serious going on with him.

So, I had this man who had these purple bumps that had been diagnosed as Kaposi's sarcoma, and was experiencing fatigue, and that was about it. Maybe at that point he looked a bit--well, he was thin. I guess he did look a bit ill. Not markedly so, but some hyperpigmentation, as I recall.

Discussing the Case with Marcus Conant at Grand Rounds, UCSF, 1981

Groundwater

I remember going to a lecture that Marc Conant gave at UC on cytomegalovirus [April 23, 1981].

He pointed out that in Africa, cytomegalovirus had a possible association with Kaposi's sarcoma. So I went up and talked to him afterwards, and I told him, "Marc, I have a young gay male with Kaposi's sarcoma."

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Among all the various tests that we did on this guy to try to figure out what was going on with him, I had done cytomegalovirus antibodies, and they were positive. Because here we had this man who was fatigued and couldn't work, and we didn't know why. Why did this young gay male have Kaposi's sarcoma, and why were these little purplish bumps on his chest and not on his legs? They were usually found on the legs of elderly Jewish Mediterranean males. Perhaps cytomegalovirus was related, we thought.

Marc said that he knew that Alvin Friedman-Kien in New York had some cases of Kaposi's sarcoma in young gay males. So I called Alvin Friedman-Kien, and Marc had just talked with Alvin the day before or something like that. At that point, Alvin had, I think, six, seven, or eight cases of these young gay males with Kaposi's sarcoma. So we ended up publishing those cases. Friedman-Kien included my case in the paper that he published on the young gay males with Kaposi's sarcoma.

Hughes

Let me ask you more about this encounter with Conant, because the way he tells it, and the way it's depicted in Randy Shilts' book, is that you were at dermatology grand rounds at UCSF. Conant had talked with Alvin Friedman-Kien the night before, and he asked the group at UCSF whether anybody had seen a similar case. You raised your hand. You were the only one in the audience that said yes, you had, and it was this same patient that you've been talking about to me.

Groundwater

I didn't recall him specifically asking the question. I remember going up to him afterwards; but maybe he did, I don't know. It's possible.

Hughes

And that was--?

Groundwater

No, I really don't remember that. I remember asking him, and then his telling me that Alvin had these cases.

Hughes

So was [Conant] giving grand rounds?

Groundwater

Oh, he was giving the lecture, yes. Maybe it was grand rounds. It probably was, yes; the same eight o'clock

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lectures that I went to just this morning, that we have every Wednesday that I continue to go to over the years. We have a meeting between eight and ten where we have a lecture first, and then we present difficult patients and discuss them afterwards.

Hughes

So from the way you remember it, then, you initiated the discussion of--

Groundwater

That's the way I recall it, yes.

Hughes

And you don't remember him bringing up--

Groundwater

I just went up to him afterwards.

Hughes

You don't remember him bringing up in the course of his lecture anything about the cases that Alvin Friedman-Kien had been seeing?

Groundwater

I don't think so. I really came up afterwards and--he was just talking about cytomegalovirus and KS.

The CDC Reports, Summer, 1981

Hughes

[tape interruption] That was April, 1981. The first report on KS in the [CDC] Morbidity and Mortality Weekly Report doesn't appear until early July, July 3, to be exact.

Groundwater

The first report was on the Pneumocystis pneumonia.

Hughes

That's right. That was the month before.

Groundwater

The fellow down in L.A.

Hughes

Michael Gottlieb reported the cases.

More on Case Management Issues

Hughes

But did you know about the PCP [Pneumocystis carinii pneumonia] report at the time?

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Groundwater

Yes, oh, yes, of course.

Hughes

Why would you have been interested?

Groundwater

Well, our patient had begun to develop some of these opportunistic infections. I'm not sure when they started; I think it was probably back in 1980. The first thing he got was cryptococcal meningitis. He had headaches, and that made it so difficult for him, and for us to deal with him. He developed one after another of these opportunistic infections, and we didn't know what was going on at that point as to why he was developing them. Apparently, he was immunocompromised, because he was developing these infections.

Hughes

What kind of tests were you ordering?

Groundwater

We'd done T-cell helper-suppressor ratios, and his T-helpers-suppressors ratio was diminished. His blood counts showed decreased lymphocytes.

Hughes

And that was an unusual test for you to order, was it not?

Groundwater

Yes.

Hughes

It was pretty unusual, period. I mean, as I understand it, that test was new overall, but I'm thinking particularly for you as a dermatologist, that wouldn't be in your normal armamentarium would it?

Groundwater

No, not really. But he was developing these opportunistic infections, and we were looking for something that could explain it. He was immunocompromised in some way. So as I said, the cryptococcal meningitis came along and we treated that.

Hughes

And who--

Groundwater

Who was the man who did that? Dr. John Gullett. He's a man you probably should talk with, because John Gullett, although I don't think he is mentioned in Randy Shilts' book, played a major role in the management of this case, if not a more significant role than I did, really. In Randy's book, it looks like I'm admitting the patient again and again, when it was really John who was admitting him.

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Randy didn't get it entirely accurate in terms of how that was done. I'm not a primary physician; I'm a dermatologist, and so I'm not going to be personally admitting him for Pneumocystis pneumonia or cryptococcal meningitis, or the cytomegalovirus retinitis, which he ultimately developed, and which really gave him--which lost the battle for him, I felt.

We followed him for over a year before he finally died, and he was a really angry sort of guy. He was angry at us because we couldn't find out what the heck was going on with him.

Although he had to quit work because of fatigue, he was determined to find out what was going on and determined to survive, to get through all these things. And he went through one horrendous experience after another with these various opportunistic infections.

But I think when he began to lose his vision with the cytomegalovirus issue, he gave up the battle. When he went blind, he died within a couple of weeks. I think he gave up. He had given a hard time to all of his doctors; he was a tough patient.

Difficulties in Reaching a Diagnosis of KS

Hughes

You said that Sagebiel made the diagnosis of KS. Why had the others not been able to do that?

Groundwater

Well, I think because it was such a rare disease, and it's such a subtle diagnosis. Even today, pathologists who have not been used to reading KS in the AIDS patients will make a misdiagnosis. I can think of a case recently where a biopsy specimen was read as Kaposi's sarcoma and then we took it over to the UCSF pathologist Dick Sagebiel. The general pathologist had initially read this man's lesions as Kaposi's sarcoma, but it turned out that the UCSF pathologist diagnosed it to be eosinophilic folliculitis, something totally unrelated. But this general pathologist, you know, had heard about all the KS in the AIDS epidemic, but hadn't heard about eosinophilic folliculitis, which is another thing we see. So he just totally misread it, and as a result the primary physician treated him with x-rays for

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his supposed Kaposi's.

That's the kind of thing that even today happens, particularly if a general pathologist rather than a skin pathologist reads it. They will not uncommonly mistake the diagnosis. In the early days of the AIDS epidemic, very few dermatologists, dermatopathologists even, had seen much Kaposi's sarcoma. This was very rare. And so they missed the diagnosis. They read it as hemangioma and proliferating angioendotheliomatosis, et cetera.

And so finally, we got the KS diagnosis confirmed by Bernard Ackerman and Dick Sagebiel. Sagabiel was chief of the dermatopathology department at that time at UCSF (later he became the Chief of the Melanoma Clinic at UCSF/Mt. Zion), and I'm not quite sure why we didn't send it to Dick right away.

Anyway, I ultimately got the slides to Bernie Ackerman, who was the dermatopathologist for NYU [New York University], where Alvin Friedman-Kien works, and he had made the diagnosis on some of those other cases that Alvin had seen.

Hughes

You need a pathologist to be sure of a KS diagnosis? I mean, it's not something you can diagnose visually?

Groundwater

Yes, these days people are so used to seeing Kaposi's sarcoma--although I feel that it always should be biopsy proven. Many times the primary physicians diagnose it by sight and without the biopsy, because it's pretty obvious now when you see a young gay male with a purple bump or several purple bumps, that it's probably KS. But the problem is that there are some other conditions that can simulate KS, bacillary angiomatosis, for example. That condition can be missed, and can be fatal ultimately, unless it's treated with antibiotics.

Hughes

Well, according to Shilts, this did go on for a while, because you apparently saw this patient first in November of 1980, and it wasn't until April 9, 1981, that you received the diagnosis of KS.

Groundwater

That's right. It went on for a long time, and I don't know how many pathologists I sent the biopsy to, probably eight or ten, before we finally got the correct diagnosis. And

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here we had this sick guy who had to quit work because of fatigue, and had these purple bumps that just had to be something more than an hemangioma or some benign condition. We kept getting these benign diagnoses back from the pathologists. The same with the lymph nodes. The lymph nodes had persisted.

Hughes

And was he getting more KS as well, more outbreaks of the lesions?

Groundwater

Ultimately, he continued to get more KS lesions. He developed them around his mouth. I have some pictures--I might be able to pull those pictures out if you're interested.

Hughes

Yes, I'd like to see them.

KS Cases at Stanford

Hughes

Also reported by Shilts was the fact that there was a second case of KS, at Stanford, apparently also mentioned at that meeting, whether it was grand rounds or whatever it was, at UCSF. Do you remember that?

Groundwater

I definitely don't remember that being mentioned at Marc Conant's grand rounds. That came along later. Maybe Marc recalls something about that, but I don't remember anything about that early on.

Hughes

The Stanford patient was the editor of one of the gay publications. I would have thought that if that case had been mentioned at the same time, you or Conant or somebody would have gotten in touch with the doctor who saw that case.

Groundwater

I don't remember that. One Stanford connection I remember is that there was a Stanford pathologist who later, in around 1983, sent me a whole series of slides of KS involving almost every internal organ, which I used in some lectures subsequently. And he himself died of KS ultimately.

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Pamphlet Distributed at the American Academy of Dermatology Meeting, San Francisco, December, 1981

Groundwater

Marc Conant and I and Friedman-Kien made up a little pamphlet--I wonder if I can figure out when. I may be able to find it.

Hughes

I know when that was. That was December, 1981.

Groundwater

Oh, it was 1981. Yes, I lose track. Did Marc have that pamphlet?

Hughes

Yes, he did have a copy of it.

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Groundwater

The pamphlet was prepared for the annual meeting of the American Academy of Dermatology in 1981. At that point in time, not many people knew about this problem, and it wasn't getting a whole lot of attention. I don't think the seriousness of it was widely appreciated--the potential for major problems in the future. I gave a lecture to an organization in the city, Bay Area Physicians for Human Rights [BAPHR], on this subject at that point, sort of raised the awareness of it. I felt at that time that KS was going to be significant. As the year progressed I learned even more about this; it really looked like it was going to be a serious problem and very few people were aware of it. So I think I got the idea just before the Academy of Dermatology meeting to come up with this pamphlet, because there was not time to get something published before the meeting. I talked it over with Marc--I don't know whether he proposed it or I did; I think I did--and we decided.

We talked to Alvin, and we got together with a graphic artist that Marc worked with. Who actually wrote the copy on the thing? I think I did. And Craig Johansen edited it. We used the pictures from my case, and I think there's one where my patient had these KS lesions around his teeth. (And that was a problem for him, too; he would eat and kept bleeding.)

Marc and I, and I guess Friedman-Kien, distributed those pamphlets at that meeting. We stood at the front of the convention hall and passed them out to various people.

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Hughes

And how did people react?

Groundwater

I don't think they were terribly interested. I mean, it was hard to tell, because I don't think that any of us spoke at the meeting. Alvin, of course, and Marc have since then done a lot of speaking on the subject at various meetings. Did Marc speak on the subject at that meeting?

Hughes

Not that I heard about.

Groundwater

I mean, the awareness of the significance of this was just coming up too quickly to really prepare much in advance. The brochure was one way to do something on the spur of the moment.

Hughes

Do you remember who paid for it?

Groundwater

I think one of the drug companies. I think Marc had some drug company--Neutrogena, maybe.

Hughes

Yes, I think you're right.

Groundwater

I don't think we made a heck of a lot of these brochures.

Hughes

Some were sent on to Alvin Friedman-Kien and other physicians in New York, and they apparently distributed them as well.

Groundwater

Oh, yes. I mean, it's a most unusual way, looking back on it. Why would we do something like this? But I don't know, somehow we got the idea to do it.

Early Premonitions about the AIDS Epidemic

Hughes

There were only a handful of cases of KS in the city. Why did you think it was going to be important?

Groundwater

That's a good question. Well, it looked like something that was contagious, that would spread through sexual activity, since these were all gay males, and we had no idea really what was spread. Also, we knew at that time that there was very widespread sexual activity, one-night stands and that

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sort of thing taking place in the gay community, within bathhouses. So an organism spread sexually in that environment would be dangerous and likely to involve a lot of people quickly. We had no idea what this organism was at that point. It was scary just to contemplate what might happen, and how rapidly an epidemic might develop, because there was promiscuous sexual activity going on in this community.

Hughes

Well, to some people, it wasn't clear that it was an infectious agent. There were several other hypotheses about what the cause might be, including poppers [amyl nitrate]. Do you remember that one?

Groundwater

Yes. There's still a man in Berkeley who believes that it's not the AIDS virus.

Hughes

Oh, yes, Peter Duesberg.

Groundwater

He's about the only one who believes that sort of thing now. Have you interviewed him?

Hughes

No, I haven't interviewed him. I'd like to; it would be an interesting variation of the story.

Groundwater

Oh, yes, poppers were definitely among the things that were initially suspected.

Hughes

But what do you recall thinking might be the cause? I mean, early on.

Groundwater

Hmm. I thought it was an infectious agent of some sort.

Hughes

Why would you think that?

Groundwater

Because it wouldn't make sense to have all these gay males developing this otherwise. It just seemed that if we were developing this condition in New York and here in this promiscuous community, there might be something being spread sexually. I think I suspected that early on, as I recall, but you know, it's hard to remember that far back.

Hughes

Yes. Well, it's hard to remember when your thinking might have changed, too.

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Groundwater

Yes, that's true, to get the sequence right. I remember the popper thing definitely.

Hughes

Do you remember having conversations with Conant? Because you'd known him for some time.

Groundwater

Well, Marc eventually set up what was called the Kaposi's Sarcoma Clinic once this developed. I'm not sure when that clinic started.

Hughes

The first meeting of it was September 21, 1981.

So very early in the epidemic.

Groundwater

It was that early, right, he got that going. I think that clinic was held once a week, or at least fairly frequently.

Hughes

Yes, it was once a week.

Groundwater

And we all met.

Hughes

You used to go to them?

Groundwater

Oh, I went to those meetings, you bet--week after week. Jay Levy, I remember, was involved in it, and the Greenspans.

I think we were just trying to keep in touch with what was going on and anything that was being published, and come up with various ideas as to what we could do about it. How did Marc express that?

Hughes

Well, he organized both the clinic and the study group.

Groundwater

Yes. Maybe it was the study group that I attended, and then he had the KS Clinic over at UC.

Hughes

Yes, there was a two-hour clinic one day a week, and then the study group met for an hour after the clinic and brought in more people.

Groundwater

I definitely remember going to those meetings for a long time, maybe at least a year or two.

Hughes

What did you do about treatment?

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Groundwater

Basically we just treated the opportunistic infections that came along. John Gullett, who was an infectious disease specialist at St. Francis Hospital, really deserves the credit, I think, for most of the case management. But he saw me as--how did he express it?--the scholar or something like that. I would tend to grab every article that was available, and I'd discuss it with him, and put it in the patient's chart. Even though I wasn't primarily admitting them and treating the Pneumocystis, I saw the patient every day, or frequently, and maintained close contact with him. I knew this was something serious, and that we needed to find some answers.

John, I think, was the guy who first reported this whole problem to the CDC.

Hughes

Oh, is that so?

Groundwater

John called the CDC and told them, and he was sort of ignored; that was before Gottlieb published his article [on PCP in June 1981].

Hughes

Gullett reported this first patient that you had seen?

Groundwater

He reported to the CDC the first patient that we had seen, and that was the first case, I think, that was reported to the CDC, even before Gottlieb, I think. John would know a little more about that.

Disease Progression in the First KS Patient

Groundwater

John was the guy who followed the patient through all those admissions at St. Francis Hospital, who basically admitted him and managed the various opportunistic infections that he developed. I was continuing to follow his skin problems. I think he developed molluscum contagiosum, and what else? Warts, I guess, and the usual infections that were later identified as AIDS-related. But I also followed him very closely in the hospital.

The KS lesions were not his major problem for much of this period. Later on, they became more of a problem, but they weren't what really killed him, and they really weren't what was predominantly affecting him adversely. It was

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these various opportunistic infections that he'd develop one after another. He was angry through every one of them. He had a lot of pluck, though; he hung in there. And we knew he was going through really difficult times, and yet he was determined to get some answers. Even though we didn't have any real answers for him at that point, he was determined. And he did hang in there with me and with John.

Hughes

Until he got the retinitis.

Groundwater

Yes, that was the thing that really hit him. I remember that. He just sort of lost that energy that he had all the way through to the end. He had tremendous energy--even though he was fatigued and couldn't work. He had energy to find an answer to this problem and know what was going on and get well.

Hughes

Some patients read the medical literature. Was he one of those?

Groundwater

I don't think so, no. There wasn't much to read. But I just remember that he was angry at us because we didn't know what was going on with him, yet he did hang in there with us.

Other KS Patients

Hughes

Do you remember when you encountered another KS patient?

Groundwater

I don't remember specifically, but I remember those early years particularly having these people referred to me. I've had a lot of these patients referred to me because I had seen that first case, and I developed a relationship with the primary physicians who had treated these cases. So I got a lot of referrals of these patients.

My wife was here working as a receptionist for my office. We both remembered this one guy who looked like an all-American--blond, blue-eyed, muscular. He came in with a KS lesion, and three months later was dead. That guy really made an impression. Within three months he was just skin and bones, and died. It was amazing how rapidly the disease progressed in some people; and in others it would go on for long periods of time.

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I remember there was a nineteen-year-old guy at San Francisco General Hospital. When they set up the AIDS Clinic over there, I consulted as the dermatologist in the clinic for a while [1981-1983]) I remember that one young guy, nineteen years old, developed horrendous KS--big purple necrotic-looking lesions on his legs.

And it was quite variable. Some patients really just went downhill very quickly with KS and died of the KS, and for others it was a minor aspect of their problem. In subsequent years, at least for most of the patients that I've seen, the KS has not been the major problem. Now there's the Pneumocystis or whatever that got to them.

Hughes

How does KS kill?

Groundwater

Well, it seems to be able to infect internal organs. As I said, that pathologist at Stanford sent me slides of the histology of virtually every organ of the body where he was able to find the KS in this one patient. You can get KS on internal organs: the adrenal gland and throughout the GI tract; it's not uncommon for it to be in the GI tract. If it gets into the lungs, [patients] have trouble breathing and it can be very scary. They can get into major trouble because internal lesions are hard to treat. Many of the treatments themselves are immunosuppressive, unfortunately.

Community Physicians' Brochure on AIDS Treatment

Hughes

You also contributed a section to a booklet entitled "Medical Evaluation of AIDS and AIDS-Related Complex."

Groundwater

Oh yes. I revised that for several years. I think Jim Campbell asked me to do that.

Hughes

And you wrote on the dermatological--

Groundwater

Dermatological manifestations of AIDS, right.

Hughes

So it was Jim Campbell who asked you to participate.

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Groundwater

It was Jim.

Hughes

What was the purpose and distribution of the booklet?

Groundwater

It was sponsored by the [San Francisco] AIDS Foundation. And I think it was to inform primary physicians. I wasn't really too involved with that; Jim organized the effort, and he's the one who asked me to write the section on dermatology. I think the booklet was meant for primary physicians who managed AIDS patients.

Hughes

And so this was to provide the basics, so that a primary-care physician or whomever it would be, would be able to recognize the various manifestations of AIDS?

Groundwater

Yes. [reading] "Guidelines for the evaluation of patients with specific symptoms in the context of HIV infection, laboratory evaluation. So it was initially the San Francisco AIDS Foundation, and later, I guess, Bay Area Physicians for Human Rights.

Dr. Groundwater's Current Practice

Hughes

Well, because I think we have to wind up because you've got patients coming, is there anything that you'd like to add to this story?

Groundwater

No, I think we've pretty much covered it. Certainly my role is relatively minimal, I think, compared to people like Marc Conant and Friedman-Kien, who made it almost their life's work. My practice is primarily general dermatology, and I have maybe 15 to 20 percent HIV/AIDS patients. But 80 percent of my cases are patients with the usual run-of-the-mill skin problems--a lot of skin cancer, psoriasis and eczemas; things of that sort.

I have maintained a very close association with UC over the years, with Howard Maibach particularly, in contact dermatitis; I spent ten years teaching residents with him in the patch test clinic. Howard is probably the world's expert in contact dermatitis--so that's been kind of an interesting experience, along with some of this cosmetic stuff, which I really enjoy doing--collagen, and therapy for spider veins, chemical peels, et cetera.

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But I've certainly maintained an interest in HIV, which is kind of far afield from some of the other things that I do.

Hughes

Yes, I would say so.

Groundwater

But you know, I feel responsible to these people, and they deserve to have someone who cares and is willing to listen and is knowledgeable and can help them. And I enjoy treating them--I wouldn't say enjoy is quite the word, but I'm glad to treat these patients.

Hughes

Well, thank you very much.

Groundwater

Thank you.

Transcribed by Shannon Page

Final Typed by Grace Robinson