The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981-1984, Vol. II
II The AIDS Epidemic
Workshop on Human Sexuality, UCSF
LewisNow, it was in that role as Nurse Educator in Nursing Education and Research [E&R] that some time in the latter part of 1980 or beginning of '81, I had coordinated a workshop on human sexuality, particularly focused on gay male sexuality.
Hughes
At UCSF?
Lewis
At UC, right. Budgets were a lot more flush than they are now; we had a lot of leeway to suggest programs that we were interested in, and do them. I think some gay male nurses asked me to do that workshop. I don't remember quite how it evolved. But I took it on and coordinated the program. I had the reputation of being the woman, the gay woman, the lesbian, who was interested in sexuality. I don't remember if I even came out at this conference. But none of the other nurse educators had ever, to the best of my knowledge, presented any kind of program that was sexually oriented, so I had sort of broken a taboo and was looked upon as a little bit weird. [laughter]
The BAPHR Conference, June 1981
Format
LewisAs a result of coordinating the E&R program on gay male sexuality, I became aware of a program that BAPHR was going to put on during the 1981 Gay Freedom Day weekend. I thought, "I'd really like to go to that." So I called and talked to the physician who had done a presentation for us at UC and said that I'd like to go to the
Hughes
On gay and lesbian health?
Lewis
Yes, the whole event was on gay and lesbian health. A lot of it was done by therapists, on psychological aspects, and then there were segments that were very physiologic-based, about STDs [sexually transmitted diseases] and prostate cancer--all kinds of different things. It was mostly focused on men, because 90 percent of the people at the conference, maybe even 95 percent, were men. As far as I know, I was the only nurse present, although there may have been others I was unaware of.
Presentation on Gay Male Sexuality
LewisActually, there were things I learned from several presentations at the BAPHR conference that I used later in AIDS education. There was one presentation I remember by a psychologist in L.A. who had done a study of 500 male couples, and there was a book from this called The Male Couple, and it was the author who was speaking. He was saying that of the 500 couples that he had interviewed, who had quite a wide range of age and years together as partners, but I think they had to have been together five years or more, he found not one couple that had been monogamous. Gay male sexuality, even in coupled individuals, involved other people, and many of those couples did that very consciously and knowingly between themselves.
That was really helpful and important information for me to realize, because in my experience as a lesbian, things had been quite different. As we got into the epidemic, especially in the very early years, we heard so much about promiscuity, and this information helped me relate on a more real level with people, with gay men particularly, about their sexual behavior. Things have changed in many gay male couples now and there is a lot of monogamy. But in those days, apparently there wasn't.
And I hadn't really been consciously aware of that. I knew that some of our friends were very promiscuous, and they would come and stay at our house and go to the baths, but I just didn't think that much about it. It was just the way things were.
You were becoming more conscious because, as a nurse, it occurred to you, Well, here is a lot of exposure to disease?
Lewis
Yes. As I learned more about how gay men related to each other sexually, both those who were single and those who were coupled, and as I gained awareness of specific sexual practices, it became increasingly clear that many sexual practices of gay men were dangerous to one's health. Of course, as all of gay San Francisco could have told you at the time, advising individuals to curtail their sexual practices raised many red flags related to civil liberties and the issue was definitely a topic of hot debate.
Alvin Friedman-Kien's Presentation on Kaposi's Sarcoma
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LewisThe BAPHR conference, which was either right after the first MMWR [Morbidity and Mortality Weekly Report] on the epidemic, or just before it, was probably in the third week of June of 1981.
Hughes
If that's the case, then it was between the first two reports on AIDS in the MMWR .
23. Pneumocystis pneumonia--Los Angeles. MMWR 1981, 30:250-252 (June 5, 1981); Kaposi's sarcoma and Pneumocystis pneumonia among homosexual men --New York City and California. MMWR 1981, 30:305-307 (July 3, 1981).
Lewis
Yes. I remember that at the conference, Friedman-Kien gave the closing address and said, even at the get-go, that the men who were getting this disease were sexually promiscuous, and that there was some connectedness there that he was unable to define between sexual promiscuity and the disease.
Hughes
He was taking a sexual history at that point?
Lewis
Apparently he must have been. There were a very limited number of cases, and I don't know how he had come to this conclusion.
Hughes
Now, would taking a sexual history be common procedure?
Lewis
No. It's not common procedure now, much less ten years ago.
Hughes
And he's a dermatologist, so it would be even less so. I can imagine for somebody specializing in STDs [sexually transmitted diseases] that might be a natural way to go, but not in dermatology.
Right, it makes perfect sense. I think he came to that conclusion only because he was a member of the gay community, and here he had these gay men who were getting this disease, and he was looking for common threads, I'm guessing.
I had never heard of Kaposi's sarcoma [KS]. That was a totally new term to me.
Hughes
Did Friedman-Kien mention any other conditions that later become part of the syndrome?
Lewis
PCP [Pneumocystis carinii pneumonia].
Hughes
Or other opportunistic infections?
Lewis
No, I don't think so. I don't remember that clearly to be able to say absolutely, but I don't believe so. But he as a dermatologist was clearly most focused on the KS, and that was what his presentation was about. It was a fairly short presentation, maybe twenty minutes or so.
Hughes
Did people take note?
Lewis
Oh, the whole room was just like awestruck. We were in a conference on gay and lesbian health, and here was something being described that was killing gay men, and nobody knew about it. It was totally frightening, because almost everybody in the audience was a gay man, and therefore themselves vulnerable. I mean, the whole audience was just riveted. Nobody moved. They could see themselves in the situation, as well as those they loved and cared for. I remember it as a really pivotal experience.
Hughes
Did you think that somebody should do something about this in San Francisco?
Lewis
Yes. I remember I was very concerned about three of our friends who were very sexually active. Shirley had driven me over, and she picked me up at the end of the day. I remember getting in the car and the first thing I said was, "I just heard about this disease that's killing gay men who are sexually promiscuous. We know people who are going to be really at risk if this is real." I had a sense that it was real, but at the same time, it was like, "Well, maybe this isn't anything that's really going to pan out." So I didn't really do anything at that point. I didn't know them at the time, but Marcus Conant and Friedman-Kien were good friends, and Marcus had been the person who invited Friedman-Kien and did the introduction. Conant may have spoken earlier in the program on other dermatology things; I don't remember.
You don't have that program?
Lewis
No. It wasn't something I saved because I didn't realize its future significance. And I don't even know that Friedman-Kien's talk was on the program. I think it was an add-on kind of thing-- The feeling was: this is something that's happening right now and you need to hear about it. It's not on the program because we didn't know about it when we made the program up, but we've been able to bring this man here, and he will tell you what little we do know.
I didn't do anything specifically about it, except to be aware of it and to start watching the rounds that were listed in the UCSF Newsbreak.
Hughes
You didn't see the MMWR on KS that came out in early July?
Lewis
No, I had never seen the MMWR. As a nurse educator, it just wasn't something that I read. Our infectious disease nurses saw it, I'm sure, on a regular basis. It became very much a part of what I was aware of later, but at that point in time, I may have heard of the MMWR as something that certain epidemiologists keep track of, but it wasn't anything I read.
Marcus Conant's Rounds on Kaposi's Sarcoma, UCSF
LewisSo I just watched out, and it was very shortly after that BAPHR conference that Marc Conant put on the first rounds on KS at UC. I don't know if it was in medicine or in dermatology. I really am not clear which venue he was using, because he was a member, I think, of both departments.
24. Conant's only departmental affiliation at UCSF has been with the Department of Dermatology.
Hughes
Did he present cases at rounds?
Lewis
Yes, I think he did, and I know he had slides. It was a formal presentation, as one does at rounds.
Hughes
What was the response?
Lewis
I think it was scientific interest. I don't necessarily remember whether the audience was particularly gay-focused. There are an
Hughes
Do physicians come to rounds in their specialty regardless of the topic, or would this have been a selected audience, those that might be interested in sexual or gay diseases?
Lewis
One of the keys would be to know what the title was. If it was Kaposi's sarcoma just flat out, that would be different than a title, "Kaposi's sarcoma and gay men," and I have no way of knowing how it was advertised. But that was one of the things that you did as an educator: look at your title and what audience you might attract. The very first major conference we did was called, "Kaposi's sarcoma and Pneumocystis pneumonia: New Phenomena Among Gay Men." That's the kind of title that attracts gay nurses.
Hughes
Which was deliberate on your part?
Lewis
Yes, right. It's a way of educating them, disseminating the information to the community that needs it. And it also lets people know that there is going to be discussion of issues that might be potentially sensitive, like issues around sexuality.
Hughes
Do you remember if the KS Clinic was up and running by the time of Conant's rounds?
25. The KS Clinic first met on September 21, 1981. (Conant to William Epstein et al., September 2, 1981. Conant's Kaposi's Sarcoma Notebook, 1981-2/1982. Hereafter, KSN.)
Lewis
Yes, it was.
The KS Study Group
LewisAfter rounds were over, I went up and introduced myself to Marc Conant, which was the first time I had ever met him. I just said something like, "Dr. Conant, I'm a nurse educator here at UC. I'm also a lesbian, and I'm really interested and concerned about these men who are sick. If there's ever anything I can do, I would like to be helpful."
He said, "Oh, well, I'm doing a KS Study Group every Thursday morning at nine o'clock over in dermatology.
26. The KS Clinic was held on Thursdays from 9:00 to 11:00 a.m., followed by the study group from 11:00 to 12:00. (Conant to Corrina Kaarlela, October 1, 1981. KSN 1981-2/1982.)
That was the first time I had ever seen or met Paul Volberding or Don Abrams or Connie Wofsy or any of that group.
Hughes
They were all there?
Lewis
Yes, they were attending the meeting regularly, as was Selma Dritz, I think.
Hughes
Altman?
Lewis
Dave Altman? Off and on, but not with regularity. [James] Groundwater was always really involved. He had to come from his private office to do it, which was a pretty big burden, but he did it on a really faithful basis.
Within a year, or less probably, the room was filled with forty people or more. It was very different as things grew. But at that very first one that I went to, it was just a little group sitting in the derm conference room.
Bobbi Campbell
Patient Presentations
HughesWas there a patient presentation?
Lewis
I don't know if there was one that very first time I went or not. Now, Conant did do patient presentations; he would sometimes have patients come in.
I met Bobbi Campbell as a result of one of these conferences.
Because he was presented?
Lewis
Yes, right, and I was there when he was presented. And that really was a galvanizing thing for me, because I was struck by the inhumanity of the presentation.
Hughes
Which was by Dr. Conant?
Lewis
Yes. But it wasn't that he was mean or cruel; it was just that he was so very scientific. We all trouped in, and it was like, "Touch this, and feel this lesion, and see this." I think they had already said that the patient was a nurse. I remember hanging back, because I didn't feel it was necessary for me to touch him in this physical way.
After Marc and the docs had gone out, I introduced myself to Bobbi. I said, "I'm a nurse educator here, and if there's ever anything I can do, I'd be happy to do that." We connected briefly, and then I went back to the meeting.
Hughes
Had Bobbi himself reacted to this treatment?
Lewis
No, I think that was the way he expected it would be. There was nothing really offensive about it.
Hughes
Well, it was the usual routine.
Lewis
Yes, that was how physicians do it. They are there to present their case and give their evidence, and then discuss it among themselves. The person who is living the experience is a third party. Physicians often talk about patients in their presence in the third person.
Hughes
Yes, almost as though they don't exist, except as a demonstration.
Lewis
Yes, exactly. And there was nothing unusual about it, but as a nurse, it was something that in my experience I had not seen that much. Although I had been a nurse for years at that point, I had not personalized the experience of the distancing that occurred between the patient and the provider during rounds. So it was really hard for me to realize that this human being was going through all that he must be going through, and so I connected with Bobbi.
Introduction
LewisI originally met Bobbi in the School of Nursing coffee room, when I was introduced to him by Tony Ayres R.N., Ph.D. Toni was my instructor for Human Sexuality and Bobbi had given guest lectures for her on homosexuality. She mentioned that Bobbi had been sick, and out of earshot she may have mentioned the possibility of KS. I do remember that when she introduced him to me he had not yet been diagnosed. When I later saw Bobbi with Marcus, it was the second time I had met him, the time in the cafeteria being the first. As I recall, It was some time after Marc had started his rounds that Bobbi was diagnosed with Kaposi's sarcoma.
27. Campbell was diagnosed with KS in October, 1981. (Richard Saltus. New Reports on Epidemic among Gay Men. San Francisco Examiner, December 10, 1981, p. B7.)
Implications of a KS Diagnosis
HughesWhat did it mean, to be diagnosed with KS at that stage?
Lewis
It meant that you were going to die. It meant that you had a disease that no one understood, and no one could tell you how you got it, how you passed it, or if you could hurt anybody. It meant that you would be exposed as a gay person, a gay man particularly. It meant that one better start getting one's affairs in order, so that meant dealing with family, if it hadn't been dealt with before. Those are the major things, I think, that come to my mind, that I was very aware of. And death was very much a part of it from the get-go.
Fear of Infection
HughesWhat about fear, on both sides?
Lewis
Oh, yes, absolutely. Because you didn't know--there was so much grey. When I used to give classes, I would talk about dealing with greys. We want absolutes; we want black and white; we want to know, but we don't know. And not knowing is so hard, and it's very scary, and we all feel very vulnerable.
I remember very clearly, Shirley and I were living in Woodacre [in Marin County] during the first few months of this whole thing. I was already going to see patients on a regular
Hughes
Was that the first year?
Lewis
Oh, yes, definitely. It was within probably the first five or six months.
The other thing that particular experience did for us was that I had been at that point in time trying to inseminate to get pregnant. With that experience, we had a conversation, and Shirley said, "You could pass this on to the baby. We don't know what it means. You can either try to get pregnant or you can do AIDS work, but you can't do both." So I made a conscious decision to stop inseminating and to keep working in the epidemic.
Hughes
It was the epidemic that was your rationale for giving up insemination?
Lewis
Oh, absolutely.
Although, as I look back on it, the reality was, at that point in time, I didn't have a lot of direct contact with patients, except those I was visiting at Moffitt Hospital. I would see Simón Guzman, and there were a couple of other patients I was seeing by then. I was going to rounds and seeing presentations there. And as I developed programs, I always included patients in the planning, but they were well enough to attend meetings. Basically, there weren't other situations where I was directly involved with patients who were ill.
Hughes
You chose the epidemic instead of insemination?
Lewis
Yes, although, I think, at the time, I had no idea it would go on forever. It was like, well, I'll stop inseminating now for a couple of years, and the epidemic will get resolved, and then I'll do this insemination. I didn't realize I was going to miss out on it for the rest of my life. It was like, this is a decision right now. It feels really important to me to be doing this AIDS work. The AIDS Foundation was just getting started, and I wanted to be part of that.
Perceiving AIDS as a Syndrome
HughesMost of the presentations you attended were centered on KS. When and why did you become aware that this disease was really a syndrome, that there was much more to it than skin lesions?
Lewis
It wasn't long at all. In fact, I think the second patient that I became involved with was a guy in the ICU [intensive care unit] who had PCP. He may have had some KS lesions, but it was really PCP that was the issue for him, and that's what he died of. So PCP as an entity was part and parcel of it from the beginning, although I don't remember whether Friedman-Kien talked about it at the BAPHR meeting. But by the time I heard the Marcus Conant talk, he was already talking about both.
Hughes
And other opportunistic infections?
Lewis
Not too much at that point. Now, Bobbi Campbell had had a very bad bout of herpes simplex, and he had bad scarring on his face. I remember him telling me when I first met him that the scarring was from his herpes. He'd been hospitalized for it, and he said that they felt that it was all related to this same syndrome.
Hughes
Which, time-wise, would have made sense?
Lewis
Yes. It fit. Because the immune system was depressed, then it was rational that they could get all kinds of diseases.
Hughes
How soon was the correlation with immune suppression made?
Lewis
Reasonably early. There was a realization that there was a connectedness. I don't know that scientists had established a cause and effect, but in the scientific community that was following this, there was, from the earliest, discussion of suppression of the immune system. So that realization was in my recollection quite early, but certainly not in all its depth and details.
Hughes
I suppose it would be only oncologists or dermatologists who would have had the background to know that until the epidemic, Kaposi's in this country had been seen mainly in people receiving immune suppressive therapy.
Lewis
Yes, it was definitely dermatologists, and then oncologists secondarily, who were aware of that. When you would go to a presentation on KS, the first thing you would get was a little litany about non-AIDS-associated KS, that it strikes sixty- or seventy-year-old Mediterranean males, et cetera. You got that in
Hughes
And make the contrast: that the new type of KS occurred in young men; it was much more aggressive, et cetera, et cetera.
AIDS and Ethnicity
LewisYoung men, and all backgrounds. There wasn't a certain race piece to it. And it was real easy to see the contrast.
Hughes
I hadn't thought of the racial aspect. Is there a tie-in later when the risk groups are created? Remember that Haitians were a risk group? I wonder if that was historical, the fact that KS as originally known did seem to have an ethnic connection.
Lewis
Yes, it was elderly Jewish and Italian men.
Hughes
So I wonder if that somewhat oriented people's thinking about AIDS towards looking for a genetic connection?
Lewis
I don't know. I don't remember much discussion about that. It was just sort of part of the litany. I don't remember them talking about the ethnicity of the gay men who were getting the diseases, except to say that they weren't necessarily Jewish or Italian, that they could be from any ethnic background.
Hughes
Well, and from early on, you had Simón Guzman, an Hispanic man, as an AIDS patient.
Lewis
Yes, Mexican. And black men, and all kinds of men. So yes, I didn't ever have a sense of an ethnic connectedness there.
Press Coverage of the Epidemic
HughesI'm interested in how different groups perceive what later becomes AIDS. The gay and straight press begin to talk about gay plague, gay cancer. They're focusing, I believe, on the KS part of the syndrome, are they not?
Yes, pretty much. [tape interruption] Do you know about when that was? I remember that there were certainly cover stories--
Hughes
By 1982, maybe earlier than that, the terms were in use.
28. The term "gay cancer" was used in an article appearing in New York Native, a gay newspaper, in July, 1981. (Lawrence Mass, M.D., Cancer in the Gay Community. New York Native, issue 17, July 27-August 9, 1981.) For a history of the press's role in the AIDS epidemic, see: James Kinsella. Covering the Plague: AIDS in the American Media. New Brunswick: Rutgers University Press, 1989.
Lewis
Right, that would be my memory. I can remember feeling, Nobody in the world knows or cares about this epidemic.
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Lewis
There was not that much in the local press in that first year.
Hughes
Even in the gay press?
Lewis
No, the gay press had plenty. I'm talking about the Chronicle and the Examiner and that kind of publication.
Hughes
The gay press mentioned both KS and PCP?
Lewis
Yes. Pretty much. They would have health-related articles in the BAR [Bay Area Reporter] and whatever the gay press was then.
Hughes
The Sentinel?
Lewis
Sentinel, right. They would have occasional articles that were done by guest physicians in a health perspective, and there would sometimes be one that was just on KS. But you would rarely ever have one on just Pneumocystis. If it was going to be on Pneumocystis, it would also include discussion of KS.
Hughes
Why?
Lewis
At this point, only gay men were being identified in the epidemic. I was going to say that it might have been because KS was identified as the gay man's disease, where Pneumocystis was something that other people got. But there weren't many other people in the epidemic at that point.
Access to Information about AIDS
LewisThere were thousands and thousands and thousands of gay men who had never heard of any of this. Unless you picked up the right papers at the right time, and read the right articles, you could be living your life and have no idea that there was anything like this around--just like a lot of people today, particularly people outside the gay community, who just have no awareness that this disease could affect them.
Hughes
I'm thinking of your description of the audience's reaction when they heard Friedman-Kien's presentation, where everybody in that room thought, Here is something that directly impacts my life.
Lewis
Right.
Hughes
And yet you're saying that that feeling--
Lewis
Did not pervade the gay community.
Hughes
Why not?
Lewis
Well, I think there are a lot of reasons. None of us like to think about our own death. Certainly those who are outside the medical realm can go through their lives not thinking about it, period, as can many in the medical environment. So I think that's a big piece. It's too scary; we don't want to think about it, that kind of thing. And there are a lot of people who don't read the gay press.
Hughes
A lot of people in the gay community?
Lewis
Oh, yes. If you happen to live on Castro [Street] or right down in the center of the Castro District, the papers are right there. But if you live in Marin or out in the Avenues [in San Francisco] or whatever, you don't necessarily even have access to the gay press. You mostly could only get it on Castro.
Hughes
You can't subscribe?
Lewis
I don't know if you could or not at that point.
Hughes
But it was more, you see it in the stand and you pick it up?
Lewis
Definitely. That's the way the gay papers have always been, even to this day. You don't get a subscription.
That's important in terms of getting the information out, because obviously only a select group sees the papers.
Lewis
And you have to get there when the papers are there. They only make so many copies. I can remember a few times when we wanted to get copies, and you'd have to get down there early, and not quite wait in line but damn close, to make certain that you got a copy. So that was another piece of it.
I think people feel a certain invulnerability, especially young people, like this disease doesn't affect me. The publicity about the disease was very much the kind where it was easy to say, "That isn't me. I'm not promiscuous." Promiscuity, especially, was a piece where people could easily say, "Well, I'm not. Promiscuous is more than I do." If you have 300 partners a year, you can think you're not promiscuous if you know somebody who has 500. So it's all relative, and it was easy to feel that that isn't me.
The Epidemic's Potential Enormity
LewisI think for those physicians who were at that conference and heard Friedman-Kien, there was a sense of personal vulnerability, but there also was a sense of the potential enormity of what this could mean, if what he was saying was right.
Hughes
You mean, knowing what physicians knew about how diseases are communicated?
Lewis
About gay men. Well, they knew their patients. Most of the people in that room had a large percentage, more than 50 percent, of gay men among their patients. They knew those men, both personally and professionally. So they knew that a lot of men are promiscuous, and that if, in fact, this were a sexually transmitted disease, that there was an enormous number of men who were at risk. So I think part of it was a sense of their own potential vulnerability, but there was also just a sense of, Wow, this disease could be really terrible.
Hughes
And is that what you were thinking too?
Lewis
Oh, yes. This presentation we'd heard just earlier that day or the day before about these 500 male couples, not a single one had been monogamous. I mean, that just illustrated to me in a more concrete way the enormity of the problem and the potential disaster.
Pneumocystis Pneumonia
HughesMost people, if they find something weird on their skin, are going to take immediate notice. But would PCP grab a person's attention?
Lewis
It wouldn't necessarily, except it could become very severe very quickly, and these people died really fast.
Hughes
In its early stages, a person might think, Well, maybe I have a bad cold, and he'd just let it go for a bit?
Lewis
Right.
Hughes
When would a person with PCP become alarmed enough to say, "I'd better take myself to my physician and see what's going on here"?
Lewis
Difficulty breathing is the key point. It would come on quite suddenly, and it would be quite severe.
Hughes
So you wouldn't miss it.
Lewis
You wouldn't miss it. And these men would most often end up in ICU [intensive care unit] at that time.
Hughes
How would they get there?
Lewis
They would mostly go to ER [emergency room].
Hughes
So it would be that bad.
Lewis
Yes. They would get themselves, or a family member or a lover, whomever, would get them to the ER, because they were having trouble breathing.
Hughes
It wouldn't be a gradual worsening?
Lewis
It wasn't slow. It was sudden.
Hughes
So it was less a referral through a community physician; it was more a direct route to the emergency room?
Lewis
Right.
Hughes
And then from there, probably to the ICU?
Most often to the ICU in those days. Now, they don't go to the ICU so often. They're even treating PCP outpatient now. Things have really changed very dramatically.
Places at UCSF where AIDS Patients Might Present
HughesI'm so aware of the KS Clinic, but there were other places where people with this syndrome must have presented themselves, because not everybody came with a KS lesion, or even if they had a KS lesion, that might not have been their primary complaint.
Lewis
The lesion could be internal.
Hughes
Yes. Where are the places at UCSF that they could have gone?
Lewis
In the early days, the places that they would have gone would have been to the dermatology clinic, if it was a skin lesion, in which case they generally would have been referred to Marc.
Hughes
In the KS Clinic?
Lewis
No, there was no KS Clinic; it was the derm clinic, dermatology just generally. Helen [Schietinger] helped start the KS Clinic, and that didn't happen until probably--
Hughes
Helen began as nurse coordinator on January 1, 1982. But the KS Clinic precedes her arrival by three months. The KS Clinic saw its first patient on September 21, 1981.
Did people, did the world out there, know it was the KS Clinic, or was it just a dermatology clinic?
Lewis
Yes, it was a dermatology clinic. They didn't have any notion that there was something that had been brought together to try to deal with this [disease], because we didn't know what "this" was, we didn't know anything. The patients started coming because the dermatologists, either in the community like Jim Groundwater, or Marc Conant, were seeing these lesions and trying to deal with them, and they were in young gay men. So the way people would get care would be through either Marc and the KS Clinic, or the private physicians.
The Role of Private Physicians
LewisPrivate physicians usually cared for those patients within their practice and at whatever hospital they were affiliated with.
Hughes
Now, this is early on?
Lewis
Yes. Like Jim Groundwater. He wasn't a UC physician. I forget where his patients were. Bob [Robert] Bolan was at Presbyterian [Hospital], I think. There were three or four physicians who were well known as gay providers.
Hughes
You said Dr. Groundwater came to the KS Study Group.
Lewis
Right, he came. And I think Bolan did very early on, too.
Hughes
So they were up-to-date, they knew whatever--
Lewis
As much as anybody knew. There wasn't a lot known at that point in time.
Hughes
So they wouldn't refer their patients to the KS Clinic?
Lewis
Not as an absolute thing, no. They wanted to manage their own patients.
Hughes
They might have referred patients to the KS Clinic, not so much for the patient's sake, but because it was where research was going on on this disease.
Lewis
That's true. And they might refer a patient to a certain study, but still maintain his care in the private sector.
Patients very often have a private physician and still participate in research. One does not negate the other. In some circumstances, it does. There are some research protocols that are so intensive that you don't need a private physician; it's a waste of money and time. But at that point in time, the patients kept their private physician and still might be in Helen's studies and working with her.
Hughes
Which would be an occasional thing, right?
Lewis
Yes.
Hughes
I understand that the KS Clinic was not set up to give ongoing care.
Right.
Hughes
A patient came in to have blood drawn, and maybe a biopsy done, and that sort of thing?
Lewis
It wasn't where you went for primary care. You went for primary care to your private physician.
Hughes
And the patients were aware of the distinction?
Lewis
They became aware of it pretty quick. Think about how expensive that is. The studies were covered if they had funding for them, but sometimes they didn't.
Health Insurance
LewisInsurance issues were a big question in all of this, because at the beginning, insurance carriers didn't know what it meant to have KS, or to have PCP. But very quickly, especially once T cells started getting counted and there were markers for the disease, insurance carriers looked out for young men who had these things, and they would drop their coverage. So there came to be a lot of subterfuge in terms of how this was all reported and dealt with in terms of financial issues.
Hughes
So you'd be careful about identifying patients with AIDS?
Lewis
Yes.
Hughes
Can an insurance company get a T-cell count?
Lewis
They actually can get the count. Usually. It's a marker.
Hughes
So insurance companies learned to ask for the count?
Lewis
Yes, exactly. I don't know if they had learned that in the first years--certainly not in '81. Maybe beginning in '82. By '83 they were getting more and more savvy about it. Because I was doing my work with AIDS from a perspective of education and volunteerism, I was not directly involved in that, except peripherally hearing people complain about it.
Hughes
The KS [Kaposi's Sarcoma Research and Education] Foundation encouraged people to immediately get medical insurance.
Lewis
Yes.
Lewis
I don't think they knew what the T-cell count meant at that point in time. It could not be identified as a preexisting condition, because usually you have to have the insurance for a year or two or so.
Hughes
The technology itself was very new.
Lewis
Exactly. Nobody knew. I can remember talking to people about, not only insurance, but getting insurance for their credit cards, and all that kind of thing, so that they had their ducks in order when the time came and didn't leave a lot of financial burden.
Lesbian/Gay Health Care Workers Conference, Houston, June 1982
Can you tell me how you happened to go to the Lesbian/Gay Health Workers Conference in Houston in 1982?
Lewis
Well, I was in nursing education and beginning to do education on AIDS with hospital staff, and also planning the conference that we had in San Francisco in June 1982. I think that conference was the first nursing conference on AIDS. The one in Houston was more general; it wasn't specific to nurses.
Hughes
Yes, it was for health care workers in general.
Lewis
Right.
Hughes
Including physicians?
Lewis
Oh, yes. There were never very many physicians there, but it's often held in conjunction with the BAPHR national meeting, or it was in those days. It's not any longer.
Jim Curran was at this conference, and we all went out to dinner together. We saw statistics of the incidence and the frequency of the disease, the statistical information that CDC had, which was limited. I remember him talking about how major an epidemic he thought this could be.
This was when they were fighting over terminology, what to call this disease, because it was still being called GRID [Gay-
Hughes
Curran had given a presentation at the meeting?
Lewis
Yes. The CDC had several people there, and they made a presentation. The mayor of Houston, who I think was a woman, or someone from the mayor's office, made a proclamation about gay and lesbian health care workers, in a positive sense.
The way the conference was set up was the AIDS program ran at the same time as another set of conference material. I don't remember the session on HIV being well-attended, although it was certainly the major point of discussion and interest among those of us from San Francisco who had gone. I had gone almost strictly for the AIDS stuff, although as a lesbian I was also interested in other things. But the reason I was able to get the time from work was because of AIDS. So that's where my focus was.
Helen Schietinger
LewisAnother thing that was important at that conference for me was that I got to spend some time with Helen. She and I had met early on. Did she tell you the story of how she got into Conant's office?
29. Schietinger was nurse-coordinator of the KS Clinic at UCSF; she never worked in Conant's private dermatology practice. See Schietinger's oral history in this series.
Hughes
No.
Lewis
I was sitting at my desk one day in nursing education and the phone rang, and a woman I'd never met said she was looking for a job. I don't know why Helen called nursing education; she should have called recruitment. She was real interested in the psychosocial aspects of nursing and counseling.
Marc had already announced that he was going to start the KS Clinic, and I was thinking about applying for the job, but I wasn't clear that that was really what I wanted to do. I said, "There is a job that I know about that would combine some of your
She said, "What's that?" I said, "This is a clinic for gay men, so you'd have to be able to deal with issues around gay men." She said, "Oh, I think I could do that." [laughter] We hadn't come out to each other at this point. Then she talked to Marc, or did whatever she did to get the position.
We met for lunch after she was employed, and then we came out to each other. But that lunch or two was about all we had, so we really didn't know each other until Houston. We went on the plane together and roomed together, because our departments were trying to save money.
AIDS Activists
LewisThat's when I began to get a sense of the differences among people coming in to AIDS work. We were all drawn by this sense of a compelling problem, but we came from different places. Helen and many people in the epidemic came from a background of activism and of being part of social change. And then there were people like me, who was much more middle-of-the-road, politically non-involved, who were drawn by the tragedy of what was happening, and the fact that it was happening to gay men. I felt a real close connection with all that.
Grace Lusby, I think, had been involved in the anti-war protests. Our lives were just in a totally different realm. In Clearwater, Florida, which was practically the retirement capital of the world, and where Shirley and I lived before moving West, you didn't hear about war protests. They were not part of the world in which we lived.
Hughes
Did it take some adjustment on your part to work with a group that had a different background than you were used to?
Lewis
We had this common focus, and we brought different perspectives. Sometimes they were more radical than I was comfortable with. When we'd be in meetings and there would be conflict, I always tried to smooth things over. I don't like conflict. But people who are activists often find that energizing and engaging.
Federation for AIDS-Related Organizations
LewisAt the Denver Gay/Lesbian Health Workers conference [in 1983], there was a lot of conflict when FARO, Federation of AIDS-Related Organizations, was formed. One of the big deals was that there had to be a male representative and a female representative from each city. Particularly some of the women would be so [pounds fist on table] right in your face, that this was what had to be, to have parity and so on. There were certain cities where there weren't many women involved in AIDS work, and in a certain sense, it seemed artificial to me when they insisted that a female representative had to be included.
In my mind, it was, Why are we spending hours going over this and being politically correct when there's work to be done in terms of taking care of people. Let's get on with the work. So some of that sense of needing to be politically correct and having parity I found awkward and uncomfortable at times.
More on the Lesbian/Gay Health Care Workers Conferences
LewisCommunity activists and health care leaders in an informal sense attend the health workers conference. They work in STD or abortion clinics--in a variety of venues. Now, the people range all the way from folks with a doctorate who are physicians and very well educated, to folks who don't have a professional health-related degree. And some of them are just street folks. It's a very wide-ranging conference.
That conference was important to me, because of meeting Helen, because of Jim Curran, because of the discussion about what AIDS was going to be called, because people were not happy with GRID, because they didn't want it related to "gay."
Hughes
The idea was that it was stigmatizing?
Lewis
Yes, definitely.
Hughes
Yet, at that point the disease predominantly affected gay males. There was no getting around that.
Lewis
Oh, yes, at that point.
Hughes
Did you think of it as a gay disease?
In '82, yes, I think I did think of it as a gay disease. We were beginning to learn a little bit more, but we didn't know about HIV at the time. We didn't know precisely the means of transmission. We had a lot of suspicions, and certainly everyone in the know felt it was definitely sexually transmitted, that it definitely was an immune deficiency of some kind.
Hughes
By '82?
Lewis
I'm pretty sure. It's so hard to actually remember in context and in terms of dates. I remember Jim at our dinner that night in Houston saying, "This epidemic is not going to stay only among gay men; this is a bigger thing." He really gave a sense of urgency: it can't stay connected with only the gay community. It needed to be viewed more broadly, because other people in other demographic groups needed to know about it. We didn't know exactly about how to take care of yourself, but it was clearly connected with sexuality, and it was a killer. As soon as you knew somebody had it, they were dying. It was really like, boom. So there was a real sense of urgency.
Hughes
Did you have that sense of urgency before you arrived in Houston?
Lewis
Oh, yes. I had a sense of urgency from real early on. I got that from Marc Conant, from going to conferences with him. I sat in almost every week on an hour session with Paul and Donald--
Hughes
The KS Study Group.
Lewis
Yes, the study group.
San Francisco Health Department Committees on AIDS
LewisThe health department director, Mervyn Silverman, also started a couple of groups. He had one group that was all physicians, his team to advise him. Then there was another group that Florence Stroud, the Deputy Director of Community Health Programs at the Department of Public Health, chaired. It was community folks, probably twelve or fifteen of us.
30. Lewis was a member of the group, which in her curriculum vitae she calls the San Francisco Public Health Department AIDS Coordinating Committee, from 1982-1986.
Hughes
You didn't have anything to do with Merv Silverman's physicians group?
Lewis
No. Well, this was all under Merv. Flo worked for Merv. She was his deputy or first assistant. And on rare occasion, Merv might appear at the door and say, "Hi, guys." Flo's group looked at the community aspects of this disease, the more psychosocial and political pieces. I especially remember Hank Wilson, a community activist who managed the Ambassador Hotel, where many people with HIV lived. He could really make clear the problems being faced by people in their everyday lives as they were struggling to live with this disease. And there were people from San Francisco General [SFGH], and the social service agencies--anybody who was interested. Of course, as the epidemic grew in size, people had less time to go to meetings.
Hughes
What sorts of things would you discuss at this meeting?
Lewis
Oh, we'd get a report and update; we'd get the statistics, how many new cases were reported this month. They'd go around the room and everybody could bring up anything they wanted. So if somebody needed help with an educational program, they might present it. The group also looked at coordination of services between the various agencies. I don't know if I was there as a UC or AIDS Foundation
31. Lewis was a member from 1983 to 1985 of the board of directors of the Kaposi's Sarcoma Research and Education Foundation, the predecessor of the AIDS Foundation.
32. See Conant's oral history in the AIDS physicians series for discussion of formation of the foundation and the first board of directors.
Marc was very concerned with generating monies to be used. He had a vision of research being done by the foundation. His vision was that this group would be able to fundraise, and there was a very heavy emphasis on that. He got several well-placed society people on the board.
Hughes
Lia Belli was one.
Lewis
Yes, on the early board.
With the idea of fundraising or political clout?
Lewis
I think both. I'm sure there was some person living with AIDS on the board. Cleve Jones, who was on the board, hadn't been diagnosed yet.
People Living with AIDS
LewisOne of the things that I really did support was having people who were living with HIV be part of the things that were happening. Like at Flo's group, they would always try and have someone with HIV there. Bobbi Campbell served that role in a number of venues after he was diagnosed. There were other people--Dan Turner and Bobby Reynolds--who served that role.
Hughes
Why did you think that was important?
Lewis
I had always felt that way. I had done conferences in the past, before HIV, on breast cancer or colostomies, in which the most effective part was having someone come and talk about what it was like living with that disease. I have always found that a very powerful teaching tool. No matter how well informed you try to be as an educator, there is something that impacts the audience in a different way when the presentation is by someone who is in that life experience.
Hughes
Yes, I can see that.
Lewis
At the June [1982] conference on Kaposi's sarcoma- Pneumocystis pneumonia there was a patient panel of I think four folks. I had always been really focused on that [patient participation] as an educator. [looking at conference program
33. Kaposi's Sarcoma and Pneumocystis Pneumonia: New Phenomena among Gay Men. UCSF, June 26, 1982. (KSN 3-12/1982)
The other place that this connected for me was in my experiences talking to groups about being a lesbian. It humanizes the issue for people and gives it a face. I think that's a really important piece.
Gay men for the most part were used to being empowered; they were used to making their own decisions, being their own bosses, used to not being told what to do. Many of these men had played by the rules: they had finished high school, gone to college, gotten their degrees, established their careers. And now life wasn't treating them the way they expected to be treated.
That turned a number of gay men into very powerful activists. They took their strength and their life experience, and they used it in very powerful ways. I think it has really impacted things in health care, at least in this area. I can't speak for the nation, but I think it's pretty well established that visiting rules in critical care are being stretched, are being changed, and much of it as a result of this activism.
Things like having people stay in a hospital room overnight. You used to let a mother stay with a child, but you didn't let an adult stay with an adult, for the most part. And now that's being changed for everybody in many, many places. People would know their lab work up and down. They went to the UC library and read up everything that was published on HIV. And patients communicated with one another across the United States.
That whole sense of secrecy, of knowing something that other people don't know, also applied to patients. They had a very tight-knit community. There was a point in time, and it was in Houston [1982], and even in Denver [1983], when you had a sense that you knew everybody who was working in this field. People had a very strong aversion to being called patients. They wanted to be persons with AIDS.
##
Lewis
There was a two- or three-page manifesto from the people living with HIV about their bill of rights, and that's basically what it was. That was written at Denver by the men themselves. They had sessions by themselves without any health care providers or other people there, where they wrote that. It's a very powerful document. The AIDS Foundation would surely have it.
They said, "I am a patient only when I am in a hospital bed. I am not a patient when I am in your office, or when I am out in the community. Then, I am a person living with this disease." They were very adamant about that. I think that was a very strong and powerful and important thing that they did for health care, that sense of moving away from the role of dependency and reliance on health care professionals to take care of you throughout your life or when you've got a terminal diagnosis. As opposed to, "I am in charge of my life. I will become informed, and I will make
Hughes
And you think that attitude stems from the AIDS activists?
Lewis
I really do.
Hughes
So it was really happening on two fronts: patients girded themselves psychologically to be potent, not to be the dependent patient. They also created ways to exchange information, to become informed about the disease, to a degree that had not been true before.
Lewis
Yes.
Hughes
Patients became a source of information about the disease.
Lewis
That's right.
Hughes
And in some cases, even knew more than physicians.
Lewis
Yes. They were very well informed. As a health care provider who's not into science so much, it was really intimidating to me a lot of times, because they would know so much more than I knew. But that was what their lives revolved around. That was the focus of their lives. Many of them had a lot of personal computer savvy, so they would be able to use their modems to access information. I think the National Institutes of Health had certain ways that you could access information. I don't know for sure, because I wasn't using them myself.
Hughes
Well, the KS Foundation early on compiled a bibliography on AIDS. It's an indication that there was a need for information. Was it used by people living with AIDS as well as physicians?
Lewis
Yes, absolutely. It was used by everybody. The volume of material was small enough at the beginning that one could reasonably, with diligence, expect to read everything--for a little while. Obviously, it didn't work very long, because the information just burgeoned. But there was a time when you could reasonably have read everything.
Hughes
Did people with AIDS come to you with pre-existing ideas of what they thought the course of the disease was and what its cause might be. Or was it more, "I have a lesion," or "I can't breathe properly," and that was the focus of their concern?
The patients that I saw for the most part were relatively healthy. I saw some people in the hospital on a one-to-one basis. At that point, they were always quite sick. The other folks that I saw were well enough to be out at meetings.
I was not in a physician's office or in a clinic situation where I would see somebody over time to watch the status of their physical situation. I was more involved with folks who were in the community--I tended to be involved with activists. If somebody wasn't going to meetings, I probably didn't meet them. I met people living with HIV as a consequence of the AIDS Foundation or setting up conferences and trying to find people to sit on panels, that kind of thing. I did have relationships with a few people with HIV, but for the most part, the people that I knew were the activists.
Hughes
You would be unlikely to encounter people in denial, for example.
Lewis
Oh, absolutely, yes. I had no way to interact with those folks or to know who they were. Nor did I, for the most part, know patients in terms of their day-to-day care in the hospital, or in the doctor's office. I was not a nurse at the bedside; I was not a nurse working in a physician's office, or in research like Helen was at one point. [interruption]
Grace Lusby was an infection control nurse at San Francisco General, so she met people at their bedsides. Helen was seeing patients at Marc's office, and following them.
34. Helen Schietinger saw patients in the KS Clinic at UCSF; she never worked in Conant's private dermatological practice.
UCSF School of Nursing Support for AIDS Education
HughesHow was it to try to integrate your AIDS work into what the university expected you to do as a nurse educator?
Lewis
Actually, they were quite generous, I would say. Helen Ripple was the director of nursing, and she was very supportive in terms of my doing conferences. For example, she funded me to go to Houston. I would write a request to go, with an estimated budget, and I almost always got them approved.
Was that because she recognized the importance of the epidemic?
Lewis
I think she did.
Hughes
She thought the university should be involved in the epidemic?
Lewis
Right. That was my impression. [tape interruption] She was very supportive in terms of funding to go to conferences, in terms of time to attend meetings, to be on Merv's committee or whatever. If I left work early or went off to do something, it was never an issue. She wasn't my direct boss; she was the director of nursing, and then under her was the head of my department. But I always had a sense that there was support that flowed down.
Hughes
That must have been true of the first conference.
Lewis
Oh, yes.
Hughes
It got off the ground because the School of Nursing was supportive?
Lewis
This was not to do with the School of Nursing. I wasn't in the school. I was in inpatient service.
Hughes
Oh, I see.
Lewis
I was in nursing education and research, which meant that we oriented all the new employees; we put on conferences. At any one time, as an educator, you would be juggling several balls. As a group, we would sit down quarterly or every six months and plan our educational programs for the upcoming months. We were given latitude to say, "Oh, I want to do a conference on this," or "I think we need to do this." If you could make a cogent argument, they'd say, "Go ahead." I had said, "I think we need to do a conference on AIDS," and everybody said, "Yeah, go ahead."
More on the June 1982 Workshop
LewisI remember this particular conference was intensive. In most conferences, a nurse educator pulled together a group of speakers, and this person did this topic, and this person did that topic. That meant that as the coordinator, all you did was introduce people. In the preparatory work, you got out the programs and you advertised, but you didn't have to do too much more.
In the [June 1982] conference, we had two case studies. One was a patient with Kaposi's, and one was a patient with Pneumocystis. We had to create the actual case study to hand out to people. So I coordinated development of those case studies. The one on the Pneumocystis patient involved a respiratory therapist, a nutritionist, a social worker, and a nurse, so it was a lot of work to get all the information together.
Hughes
Do you remember who came? What disciplines were represented?
Lewis
Nursing, it would be primarily. It was advertised, as I recall, also to respiratory therapists. They had a CE [continuing education] requirement, and we got CE hours for respiratory therapists. It was advertised to social workers. My guess, and I don't have any statistics that would support this absolutely, but that 80 percent, perhaps as high as 90 percent of the people who attended were nurses. And I suspect that we had 120 people attend. We used a double room in the School of Nursing.
Another thing that was different about this workshop was that we did it on a Saturday. Most conferences that my department presented were during the week. This one we did on a Saturday because we wanted to connect it with the Gay Freedom Day parade, which was that Sunday, June twenty-seventh. We felt that a lot of people might have trouble getting off work to attend a conference on a subject that that was not well known and not perceived by the health care population as a major problem, and the workshop title mentioned "gay."
We provided a catered lunch, and that was unusual. It cost fifteen dollars for a UC employee to attend, with lunch and coffee break and everything else! [laughs]
Hughes
Do you remember the audience's reactions?
Lewis
Oh, it was very powerful. People really were blown away. It was a very well done conference. Helen did a little blurb on KS and PCP for fifteen minutes, and then we had Judy Harr, who now is an educator over at USF [University of San Francisco], talk on immunology. She is one of the best educators I've ever seen. She just grabs an audience. She has a real understanding of the immune system, and she loves hard science.
Then we did two case studies, which are very engaging because you're hearing about an individual. We had a panel discussion for each case and each of the speakers had ten or fifteen minutes to talk about their view of the case. Then there was discussion and questions, so that the audience was really engaged. By ten o'clock, all the lectures were over. As soon as they came back
Then we had a lunch, and then we had another case study. Then they heard the patient panel, and then I did a close on taking care of ourselves, which had to do with sexuality and political activism and being there for people.
Hughes
But not infection control?
Lewis
I don't know if we had infection control per se. Linda Rosendorf an infection control nurse was on the panel on the KS patient, which was based on Simón Guzman.
Hughes
Did you make new connections with people at that conference?
Lewis
Yes, both at the conference and planning for it. For the most part, the people who attended went back to their jobs and did whatever they did. In addition to meeting many of them, I made new connections with folks such as Margaret Walter, R.N., a staff nurse who helped write the case studies and did a presentation as a panel member. Basically, what I did was talk to the head nurse and the people who were at the bedside caring for patients to find out who might be good to do this kind of presentation.
Marty Hill, the respiratory therapist who presented as part of the PCP case study, was actually over at San Francisco General. We got him to talk about what his experiences were, even though it was with a different patient.
Hughes
Why didn't you invite somebody from UCSF?
Lewis
I don't remember. We had a planning committee. That's where this idea of case studies came about. You say, "Well, if we want to have respiratory therapy involved in this, who would be good?" And his name came up.
AIDS Activities at San Francisco General
HughesThe AIDS Clinic at San Francisco General didn't open until January, 1983. But patients with KS and PCP were being seen there before then. Were you aware of what was going on at San Francisco General?
Lewis
Yes. I was hearing about it at Flo Stroud's meetings. A big part of the discussions at those meetings was, should there be a
Hughes
What was your opinion?
Lewis
I was generally of the opinion that people with HIV should be kept separate. I had seen too many instances of--because if you integrated into the general population of a hospital, in those days, I think it would have been a lightning rod for people who were homophobic, who were right-wing Christian you've-got-to-change-your-life kind of people, to be totally nonsupportive. I could recognize the fact that the disease was stigmatizing, but I was certain, as did turn out to be the case, that many of the staff who would choose to work in the unit would be lesbian or gay themselves, because of their desire to support the people who were living with HIV.
Hughes
Well, that had been your experience thus far.
Lewis
Yes.
Gay Community Involvement
HughesIt seems from what you're saying that in San Francisco it's not only a gay disease, but, with noteable exceptions, the people who are primarily involved with the epidemic are gay as well. Would you say that's true?
Lewis
I would say that was true. There were certainly many, many exceptions, Grace Lusby being a prime example and certainly the folks from the health department, Merv Silverman and other people who were absolutely outstanding. But those of us who became involved at the level of community activism--I mean, I'm sure there would not have been a conference [at UCSF] had I not been there.
Hughes
Were existing lines of communication between the gay communities on both coasts being used or were new links forged?
Lewis
I think they were new. [tape interruption] There were some existing links, because the gay and lesbian health care workers' conference occurred before HIV, so there was a group of people nationally who were interested in gay and lesbian health care and health worker issues.
And there was BAPHR.
Lewis
And there was BAPHR, Bay Area Physicians for Human Rights. They were a national organization. So there were those two pre-existing groups. There was quite a bit of rivalry between the San Francisco AIDS Foundation and GMHC [Gay Men's Health Crisis] so there was not an effort to link those two really closely.
I remember Marc real early on having a roughly drawn map of the United States, showing San Francisco here and New York here, and drawing a line and saying, "The San Francisco AIDS Foundation"--it was the KS Research and Education Foundation at that point--"will be established and everything will come to San Francisco." He saw the foundation as being the key national AIDS organization.
Well, New York didn't see it that way at all. [laughter] They saw it very differently. So there was a tension that existed for some period of time between the AIDS Foundation, as it originally was envisioned, and GMHC.
In terms of the links that were formed, they may have derived in some portion from the gay and lesbian health care workers' group, much more from that than from BAPHR, I think. BAPHR docs may have had connectedness from a scientific standpoint, but not from a political and organizing standpoint.
FARO was a federation of local AIDS organizations. It was an attempt to try to connect all these groups together in a federation, where each would maintain its autonomy and its organization relative to its local community but be able to share resources--everybody was reinventing the wheel. Everybody had to have educational material to put out to people, and instead of twelve different groups writing their own material, there ought to have been a way to get yearly updates that were handed out to everybody.
Hughes
Did that indeed happen?
Lewis
Well, it was not very successful, primarily because of funding issues. And then a lot of people questioned whether there was really a need for the group and was it effective, and how could small-town groups be involved? I was one of the female San Francisco representatives--the first one, as I remember--and Bobbi Campbell was the male representative.
##
We met three or four times a year. One of the major questions was: who was going to pay for those airline tickets? Maybe the AIDS Foundation could afford to cough up a couple of airline tickets several times a year. But if it was a small organization struggling away, which hardly could raise enough money to maintain a facility, it just didn't have the resources.
So that meant that a few organizations, like GMHC and the San Francisco AIDS Foundation, dominated because we were the ones who had the people at the meetings. So there was a lot of jealousy. And then sometimes a group could send one person but not two, so then did they send the woman or the man? And if one came without the other, particularly if the man came without the woman, then that was not okay. The group could be quite contentious, because almost everybody had very strong feelings and were very vocal about them. The meetings would drag on for endless hours.
FARO served a purpose for a limited time, although it did not meet its grand purpose, and finally just died away.
Hughes
Did GMHC also have national aspirations?
Lewis
I don't know. I didn't hear about that. GMHC has in many ways moved in a different direction. They actually do a lot of direct care provision, from what I hear. I think they incorporate Shanti psychosocial support kinds of things.
Hughes
Under many roofs.
Lewis
Right. I think one of the reasons the federation was not real successful was because the organizations were so disparate in their needs and their interests and their goals.
Hughes
FARO no longer exists?
Lewis
It died its natural death after about two years. But a lot of the same people are still involved in HIV, I think, and the local organizations still exist, for the most part. I'm sure they've come together to do lobbying, which was part of what FARO was supposed to have been about. It was supposed to lobby and to develop a legislative agenda for HIV, because no one organization, even one as strong as the GMHC or the AIDS Foundation, had the resources, financial and otherwise, to do that. At the time, we just didn't have the resources to support FARO in the way it needed to be supported. I'm sure there is an organization that does that now.
Hughes
Well, AmFAR [American Foundation for AIDS Research] does a lot of lobbying.
That's true.
Hughes
I came across a memo from Conant to you which was dated July, 1982.
35. Marcus Conant to Angie Lewis, July 29, 1982. (KSN 3-12/1982)
Lewis
I don't remember giving that. But six months or something after the June 1982 workshop, we did another one at San Francisco General, to give both venues the information.
Hughes
Obviously acknowledging that AIDS patients were being seen at both institutions.
Lewis
Right.
Tensions between UCSF and San Francisco General
LewisI assume that you're aware of the tension between UC and General?
Hughes
Well, please talk about your perceptions of that.
Lewis
I don't know a whole lot about the inner workings. I know that as a nurse at UC from 1975 on, San Francisco General was just sort of "over there." It was never looked upon very favorably. It was a place where residents and interns had to rotate through, but they always were anxious to get back to UC, to the "real" place. So you never had a sense of General being part of the UC family.
Hughes
It was the county hospital.
Lewis
It was the county hospital. In fact, I don't know if I was even aware of how many UC people, paid by UC, have their offices there and work there full-time. I don't think I had any understanding of that at all. I was a head nurse; I was in the hierarchy, but it just wasn't anything that you had an awareness of at UC.
I just couldn't understand why all of the AIDS activities were going over to General. It was like, "Wait, what is going on? Why is this happening? Why not take a medical unit here at UC and make it the AIDS unit?" But it was very clear from the get-go that AIDS was going to be at General.
I think the health department supported that. I'm not sure what came first in terms of the health department wanting the AIDS unit at General, or UC not wanting it.
36. See the oral history with Marcus Conant in the AIDS physicians series for his view on the decision regarding location of AIDS units. Lewis uses "UC" to mean exclusively UCSF, even though SFGH is jointly administered by UC and the San Francisco health department.
Hughes
Why was that such a certainty?
Lewis
I'm not sure. That's the kind of discussion I was not privy to. This tension between UC and General is something that very few people know about. I heard a very good presentation Marc Conant gave at Langley Porter Psychiatric Institute seven or eight years ago about what happened at UC, and his perception of the Department of Medicine and the dean. The decision was made at that level, way beyond anything I was aware of.
Marc gave a very articulate description of the situation and the difficulty he faced in trying to get the university to acknowledge that AIDS was a problem and that we needed to put resources in it.
I mean, when UC finally did open an AIDS clinic, it was called the Adult Immunodeficiency Clinic. It was like, Give me a break! Adult immunodeficiency--because we can't call it AIDS. We can't say the word, and have it up here on the hill.
Hughes
Did you experience homophobia on a personal level?
Lewis
No, I did not personally have that experience. The Nursing Department was very supportive. Helen Ripple was supportive, my boss was supportive, and I was given a lot of freedom and flexibility and encouragement to do what I wanted to do. They saw a real need for nurses to be educated, because we were seeing HIV patients in the inpatient units. Guzman was at UC.
Hughes
Now, was that because he was an early patient?
Lewis
Yes. That was before there was a 5A [inpatient AIDS ward at San Francisco General] or anything like that.
Hughes
A patient who presented at UC would be shuffled over to the AIDS Clinic at San Francisco General?
If someone were sick enough, he would certainly be admitted to UC. I mean, if he was critical care. Someone who didn't have any resources would have been encouraged to go over to General. It was fairly well publicized in the gay community fairly early on that there was an AIDS Clinic over at General and that an inpatient unit was opening. That was all in the gay press. That meant that ambulance drivers would know that that's where somebody with HIV probably ought to go. So the information got disseminated, and that then decreased the number of people who might have come to UC.
Now, of course, UC does have this Adult Immunodeficiency Clinic and now has a quite active AIDS service.
Hughes
What's the breakdown? People come to UC if they can pay for it?
Lewis
I don't quite know what the breakdown is. Part of it is that, but they do take Medi-Cal. A university hospital has got to do that. I think part of it is where people feel more comfortable.
Changing Patient Demography
LewisWard 86, which is the AIDS clinic at General, has really changed pretty dramatically over the years. Now maybe 20 to 30 percent of the patients, maybe even 40 percent, are minority.
Hughes
And not necessarily gay?
Lewis
And not necessarily gay. Some are gay. There are a lot of IV [intravenous] drug users. The demography has changed quite dramatically over the past four or five years.
They still get some of the middle-of-the-road gay white men, which is what their population was initially 95 percent of the time. But it's really changed a lot, and it's made it very hard for the providers who went into this with their initial impetus being a sense of connectedness with patients who looked and sounded and felt a lot like them, to a population now that is very different. Some people, like Gary Carr and J. B. Molaghan,
37. Carr and Molaghan are nurse practitioners at the AIDS Clinic at SFGH. See Carr's oral history in this volume.
And probably some people did drop out.
Lewis
Oh, yes. But it's very hard to separate out how much is due to a natural burnout, and how much to the changing demographics and face of the epidemic.
Fear
HughesWell, talk a little about fear. In your educational endeavors, I imagine that there was a fine line between imparting the significance of the epidemic, and not overly frightening people.
Lewis
Well, it was something that needed to be acknowledged pretty early on in any presentation you were doing, particularly in the very early days when we really didn't know the mode of disease transmission; we didn't know how to prevent it; we didn't know anything.
Hughes
And the disease was scarier, because of ignorance?
Lewis
Yes, not knowing. Shades of grey, which I used to talk about, are very frightening.
Hughes
More so than, "All right, we have a virus"?
Lewis
Much more so, because once you know what it is, then you feel you can control it and take some steps. When you don't know, then it's very, very frightening. Content was such a small part of an educational presentation, because much more had to do with dealing with fear and unknowing, dealing with homophobia, and trying to humanize that piece for people.
Disease prevention dealt with sexuality, or at least at that point in time. It didn't move into drug use, which is a little different. But at that point in time, we were dealing with sexuality. All you have to do is hear [Senator] Jesse Helms in the past week talk about this "disgusting, horrible behavior [homosexuality]." Well, there were some people, and still are, in the educational venue who felt, "Well, they [gay men] just need to stop. It's their own fault, and why don't they just stop?"
One of the things we looked at in AIDS prevention was how to be sexual in different ways. If you were talking to an audience of gay men, your messages were quite different than if you were talking to an audience of health care providers that was basically
You didn't get up and talk explicitly about sexual behavior. We had a series of exercises that evolved over time, like helping people realize how difficult it is to change behavior. We all know what helps keep you healthy, so how many of you this morning flossed your teeth? How many of you only had X grams of fat in the past twenty-four hours? How many of you took a walk or did your exercise? How many of you smoke? We looked at those changes that any of us find extraordinarily difficult to make.
And then, taking sexuality and saying, "Now, someone says to you, 'But you can't ever have intercourse again.'" We tried to help people think about those issues, rather than just saying, "But all you have to do is stop." We took it away from the realm of being an absolute, "It's so simple, just stop," to having people think through, what would that mean in your life? How in the hell does anybody stop?
Hughes
Could you get through at that level?
Lewis
Sometimes. Certainly not to everybody. I don't even know if you got through to most.
When I was assistant director of nursing [1986-1988] at Langley Porter [Psychiatric Institute], I did do educational programs for the housekeepers. They were all black men, poorly educated, and they were convinced that AIDS was some kind of white man's revenge. There you had to deal with issues of, "Well, everybody says this came from Africa." You never knew what you were going to deal with in a workshop [laughing]. But it generally boiled down to fear, homophobia, and sex. You had to be able to deal with those issues in a public situation.
Hughes
An individual's fear of getting infected?
Lewis
Yes. It was fear for themselves and their families. It was a very real thing. I had felt it.
Hughes
Yes, you had.
Lewis
And one of the things that one often did in a presentation was talk about fear, and the fact that we've all felt fearful, and that part of living is being fearful at times, and that we need to use fear to keep ourselves safe. You don't go messing around with needles and sharps and fluids. There are times when it's reasonable to wear gloves, to wear gowns, to take full precautions.
But that doesn't apply to going in and holding someone's hand. It doesn't apply to sitting on a bed. What a lot of people did was transfer their fear of catching the disease to the person with the disease, and then that's a way of distancing that person. Part of every conference very purposefully would be, when people finished their presentation or panel discussion, for myself or whoever had made the announcements to go and hug people with HIV, as part of saying, "Thank you for being here, et cetera." Or whenever a person with AIDS came into the room, I made a point of holding them and being there physically with them. I think that role modeling behavior is an important thing to do.
When I went to visit Simón, I would sit on his bed, and I would take my gloves off. We were wearing gloves at that point;
38. Guzman died on March 25, 1982. (Shilts, And the Band Played On, p.137.)
Simón was really quite sick when I was seeing him. Although we didn't speak the same language--he only spoke Spanish--I would sit on the bed or pull a chair very close and hold his hand, and just sit in silence. I think I demonstrated to staff that personal connectedness is really important, even for somebody where you have to go in in full infection-control regalia.
It could have been dangerous. It could have been transmitted by touching. But I was always real careful to wash my hands as soon as I left the room, because we didn't know. I always have felt that skin-to-skin contact is so important. People living with HIV were very eloquent that not being able to touch was just so painful, and that loss of connectedness with people.
Hughes
I know there was a lot of controversy in the gay community about safer sex education.
Lewis
Oh, tons.
Hughes
Was this a subject discussed by Flo Stroud's committee?
Lewis
I don't think we talked about it so much there. Much of the discussion around this was actually in the gay press. If you go back to the BAR [Bay Area Reporter ] and the Sentinel [San Francisco] of those years, the letters to the editor, the
The line I remember from the June 1982 workshop was when in that last presentation I said, "And don't rim strangers. It's just not safe." I remember three women coming up afterwards and saying, "And what's this rimming?" [laughter] "Well, let me tell you." When I did educational conferences, generally it was more at the level of how might one be sexual without exchanging fluids, which in some ways is unrealistic, but in other ways, that is safe.
The bathhouse question was a community debate, and not just in the BAR and the Sentinel but also in the Chronicle and Examiner. I mean, it was like everywhere. Generally, I didn't get into it during educational presentations, but I did go to some meetings. I went to one meeting at UC that was about the baths, with community activists.
Multidisciplinarity in Medicine
##
HughesOne of the unique things about AIDS activities as they started at UC, and then later when they became more formalized at San Francisco General, was a multidisciplinary approach. Had you been associated with a medical effort that incorporated different disciplines? I'm thinking about the San Francisco model of comprehensive AIDS care that eventually evolved.
Lewis
No, nothing that elaborate. My focus prior to HIV was OB [obstetrics]. Certainly in women's health care and in care of families many disciplines are involved, both in the hospital and in the community. There was some community involvement in terms of public health nurses and some community support, like La Leche League. So there are some models that incorporate a variety of disciplines.
I think that my experience in OB was an asset in terms of HIV, because a lot of people involved in AIDS had not had experience that involved a number of disciplines or the community in the way that I had had. I had been very involved in trying to establish a free-standing birth center in San Francisco and services that involved a lot of community people. I had done the same sort of thing in Seattle.
So yes, I think I had seen a model that was less comprehensive than what AIDS has evolved to, but that gave me a
I also believed that none of us knows everything and that we all bring our piece, and that we have to really encourage other people to contribute their ideas and/or expertise. I think one of the roles that I played was encouraging everybody to do their best and give what they could give. We don't each have to know everything, and we all learn from each other all the time.
When I did the book,
39. Nursing Care of the Person with AIDS/ARC. Angie Lewis, ed. Aspen Publications, 1988.
Hughes
Did you choose the contributors?
Lewis
Yes. That's one of the roles of the editor. I put out a call to people that I knew saying that I was going to be doing this. I guess I put together an outline first and then sent it out in a series of revisions, asking people to contribute and give me ideas on who would be good authors. It evolved as a group effort. I'm good at getting that kind of thing organized and orchestrated.
Hughes
It's a very powerful book.
Lewis
Yes. Having a chapter by a person living with HIV was very significant and unusual. That was something that I had not seen modeled. If you look at medical books written at that point in time, you never saw a chapter by a person living with whatever the disease was.
Hughes
Has AIDS made an impact in that area, too?
Lewis
I don't know.
Hughes
Well, the value of the multidisciplinary approach, particularly in a multifaceted disease, seems pretty evident. But on the other hand, were there day-to-day logistical problems in working with an array of different people, coming at the disease from quite different perspectives?
Lewis
Yes, and logistically tremendous difficulty. I mean, to have a planning committee for a conference is really difficult where you got people from San Francisco General, people from UC, and nurses
It was logistically difficult from my perspective, because during those early years of the epidemic, I was living in Woodacre in Marin County. Shirley often talks about how many hundreds of movies she sat through while I was at meetings. Our jobs at UC ended around four or four-thirty. Most meetings would start around six-thirty or seven. So we'd go out to dinner, and then she'd go off to a movie while I went to the meeting, because it was silly to drive two cars into San Francisco.
Hughes
Did you think that health professionals recognized the importance of having a multidisciplinary and comprehensive approach to AIDS, or did they see the epidemic pretty much through the lens of their specialty?
Lewis
Well, physicians tend to be very egocentric, and I don't think it's any different in AIDS than in anything else. [laughter] I think they appreciate and see value in other disciplines, but they see themselves as the leader of the team.
The San Francisco Model of Comprehensive AIDS Care
LewisNow, the multidisciplinary approach was not as obvious at UC as it was at General. It was really at General that it began to evolve into something unique. In caring for patients up on OB at UC, we had the social workers; we had nutritionists; we had chaplains; we had ethicists; we had physicians; we had nurses. UC, and university hospitals in general, tend to operate in a multidisciplinary mode. So I don't think that was a great deal different when I worked with AIDS patients at UC than what I had seen in the past.
Where it became quite different was as 5A was organized, and I think as you talk with Cliff Morrison
40. Morrison is largely responible for planning and organizing Ward 5B, the inpatient AIDS unit at SFGH, which opened in 1983. In January 1986, the unit moved to Ward 5A. See Morrison's oral history in this series.
They set up things to help the staff members. For example, they had support groups. They had special arrangements for staffing, where people could take breaks when they felt overwhelmed. Many parts of the 5A model that Cliff developed are still in action; some aren't. They were more expensive. They were labor-intensive. They require extra staffing, and I think there was some jealousy from nurses in other units and in other venues.
I think that HIV and AIDS did actually impact the nursing profession more broadly. I heard on the news in the past few days that [Senator] Jesse Helms and [Representative Newt] Gingrich are talking about a disproportionate share of research funding going to AIDS and that the patients are getting too many services. There has been that sense among some people all along, as the multidisciplinary model evolved and became more and more complex.
There are, in fact, services and resources for people with HIV that are not there for other people with terminal and life-threatening illnesses in their families. And there has been a sense among many people that that isn't fair, that the playing field ought to be leveled in some way. I think that is going to be a debate that we're going to hear in the coming months, because clearly, as they're trying to decrease the [national] deficit, they're looking at how we spend our health care dollars. Giving people the range of services and the multidisciplinary approach that has been the model for HIV, which--. You could look at the other side and say, "Why don't we use this model for everybody?" But it is expensive.
At one point, many of those dollars were from private donations and from the resources of the gay community, but it's gone beyond that and the community has broadened now. When it was almost all gay men, and white gay men at that, then other white gay men felt a need and desire to contribute and to be there. That has changed somewhat, and the generation that had that sense has either died or they're older and they're dying of other causes or having their own life problems. And people just wear out. Whether it's AIDS or cancer or whatever, people do wear out in terms of giving and being there for people.
Hughes
Am I understanding you to say that what happened at San Francisco General was different because people working in AIDS were all
Lewis
Yes, that's a very good assessment. UC didn't have the resources, or was unwilling to devote resources, to establishing and maintaining an AIDS clinic. When they did establish one, they wouldn't use the AIDS word, but had to call it the Adult Immunodeficiency Clinic. Marc Conant would have been very happy to develop an AIDS clinic at UC. He would have been very good at it. It wasn't just a KS question; it would have required other physicians like Volberding with his oncology. But UC had no interest in providing a coordinated approach. Then there was San Francisco as a city that gradually developed this integrated approach, with the Visiting Nurses [Association] and hospice and the AIDS Foundation and San Francisco General.
Communication between the AIDS Clinic and Inpatient Ward at San Francisco General
LewisInterestingly enough, there wasn't a lot of communication between [Ward] 5A, which is the inpatient unit, and [Ward] 86, the outpatient clinic. I worked on 86 with Donald Abrams' Community Consortium
41. For information on the San Francisco County Community Consortium, see Abrams's oral history in the AIDS physicians series.
They are both extraordinary units and I have great respect for them, but there isn't that connectedness that one might have thought that there would be. I don't know the history of that.
More on Bobbi Campbell
HughesWould you like to talk more about Bobbi Campbell?
Lewis
Bobbi Campbell was quite an incredible man. Absolutely flaming faggot. [laughter] And proud of it. Sister Florence Nightmare.
42. Campbell was a member of the Sisters of Perpetual Indulgence, a gay street theater group, whose members dressed in nuns' habits.
Hughes
As of the AIDS epidemic?
Lewis
No, I think before. I mentioned that I used to do classes in the School of Nursing on human sexuality, and I know Bobbi had done programs there also. So I know he had been out, and I'm pretty sure at his university, he had been active. So I think he had a history of activism and political awareness.
He certainly was very much a mover and shaker once he was diagnosed, and he made a conscious decision that he would be the AIDS poster boy. I met him very early on at one of the KS Study Group meetings that Marc Conant had, when he came in as a patient and his case was presented. He had had a very bad case of herpes simplex, and he had a lot of scarring on his face. He had been hospitalized, and that was when they had first realized that he was ill. It was subsequent to that that he was diagnosed [October 1981].
Hughes
You mean, from the herpes they deduced AIDS? Or whatever it was called then.
Lewis
It's hard to remember what the right terminology was with the right year. Yes, that's how he was diagnosed.
Bobbi was very articulate. He and I did a presentation in New Orleans at the American Nurses Association [ANA]. Bobbi and I were asked to present at the last minute. The two of us submitted a proposal, and didn't hear from them for an extended period. We assumed that nothing was going to happen, and then got an invitation days before we were supposed to go. So it obviously was something that the ANA wasn't clear that they wanted to do.
We made a fairly major presentation, which was well attended. I remember we were in the large auditorium, so it may have been a plenary session. There were hundreds of people. I think I gave
Hughes
Because?
Lewis
Oh, that the ANA invited queers--those anonymous statements that you get occasionally. You just have to put them aside and not let them bother you.
Bobbi was probably the prime author of the People with HIV bill of rights. He always liked to get out there and be very articulate and use very feisty language. He was a mover and shaker in terms of orchestrating that kind of thing. He was very ready to always be out there. You know, he was on the cover of Newsweek .
43. August 8, 1983.
Hughes
Yes, I realize that.
Lewis
He liked that attention. He was interviewed a number of times by the national press.
Diseases Diagnostic of AIDS
LewisI met several men who had been diagnosed with terrible shingles and--
Hughes
Was herpes recognized as one of the diseases associated with AIDS?
Lewis
It came to be recognized. I don't think initially that they realized quite what was happening, but it wasn't long before herpes was accepted as one of the diagnoses.
At the Denver meeting [in June 1982], the diagnoses were a big part of what was being discussed. What diseases were included as part of the diagnosis has been a point of discussion quite often all along. A diagnosis of AIDS determined which people would get services like Social Security, so the diagnosis was really important.
Hughes
You wanted to get new opportunistic diseases on the official CDC list.
Yes, the more included, the better, from the perspective of the patient. And yet, once a disease was included, it was stigmatizing in and of itself. So it was--
Hughes
A two-edged sword.
Lewis
Yes, exactly. Tension was a big part of AIDS all along.
Comments on People Living with AIDS
##
HughesPlease comment on how people living with AIDS experience and cope with their illnesses.
Lewis
One of the things that's always really struck me about people living with HIV is that, for many of them, it leads into the best time of their lives, in a lot of ways. Many people that I read of and talked with saw it as a time when they got their lives together and took control, and made very productive changes. I've heard of that as being particularly true for a lot of people who had substance use problems, and may have given up for a period of time, and then realized that, no, there's more that they can do to become much more productive citizens.
In the early years, the way people coped was--generous isn't the right word. There were people who were very angry. But for the most part, I saw a great deal of giving, a great deal of spiritualness, not religion--it wasn't that people got religion--but they got in touch with their spiritual self. When they were healthy, they often worked in AIDS organizations. Many of the early workers, both paid and unpaid, at the AIDS Foundation, Shanti, and other organizations, were people living with HIV. And so they gave back a great deal.
They often made efforts to repair bridges that had been broken with their families. Families responded in different ways. Some were terrible, and some were wonderful. But I was always very, very impressed with the way people coped, and how they dealt with this blow that they'd been given. I found it just awe-inspiring many times, that people would be so giving when they had so little energy to give.
Bobbi was certainly a good example of giving until the day he died, and being there for people, and being willing to go out and do presentations and talk about his experiences, and put himself out there. That's real courage. And there were many, many other people like that--Bobby Reynolds, and Dan Turner, and so many
Member, Board of Directors, Kaposi's Sarcoma Research and Education Foundation
In 1982, you became a member of the board of directors of the KS Foundation. How did that come about?
Lewis
There was an open call for people who wanted to be on the board, and I applied. Bob Bolan was the president of the board at that time. There was an interview process, and I think they selected me because I was doing community education. The foundation was aware that it needed to do more work in that area, and I felt that I might have something to offer there. The area I was weak in was the board needed to raise money, and I'm not a good money-raiser. I didn't go with the intent of doing a great deal of that, although we had to agree as a board member that we would participate actively in fundraising.
Marc Conant at that point, I think, was already off the board.
44. Conant was president of the foundation board of directors from 1982 to 1984.
Hughes
That was one of my questions: how involved was he in actuality?
Lewis
My recollection is he was not that involved, although everyone was aware of him. He was doing a lot of national and international speaking and was a public figure. But in terms of the day-to-day work of the board, I don't recall him being at meetings on a regular basis.
Hughes
You said last time that he envisioned the foundation as having a national presence?
Lewis
I know that to be true. Marc had a vision that there would be a national AIDS research and education effort, and that it would be
The City of San Francisco's Response to the Epidemic
HughesWhere did Marc and others look in those very early years for the central organization of the city's response? Who was it?
Lewis
I think it would be primarily Merv Silverman. Dianne Feinstein was the mayor, and she was quite responsive. She had a large contingent of gay and lesbian people who had been supportive of her through the years, and so she was very much there for the gay and lesbian community. Then in the health department, of course, you had Merv Silverman. So there was city emphasis on the epidemic, but at the same time, there were lots of other problems in the city. It was not the major problem that it is today; it was a growing problem, but it was still relatively small in the scheme of things for the city.
Hughes
My understanding is that Merv Silverman wasn't particularly engaged in the epidemic until 1983, when the bathhouse episode began.
45. See Silverman's oral history in the AIDS physicians series.
Lewis
It was just one. It was there in the background, but it wasn't a major issue that the city focused on. The bathhouse episode got into the major papers and was a big deal. There were major news stories on that. They made the whole city aware that AIDS is a problem, and it's a growing problem, and our city needs to deal with it.
Community Social Services for People with AIDS
LewisIn the real early days of the epidemic, I was trying to hook up with the American Cancer Society or Visiting Nurses Association, trying to find--. As I mentioned, I had been an OB head nurse for a number of years. When a mom went home with a baby, we could send out referrals and get help. When we had people in the hospital who needed care at home, we could refer them to agencies.
I remember making lots of calls, trying to get agencies to incorporate people with HIV into the services they already provided. I really am a strong believer in not reinventing the wheel. If there's already a service provided, why not just add in another group of people?
Hughes
Were the agencies responsive?
Lewis
Not at all. None.
Hughes
Why?
Lewis
In my mind, it was more homophobia and less infection control issues. They would for the most part say the disease was unknown and cite infection control issues. I think it would be real difficult for a public agency to cop to homophobia. But the reality is, when you called and initiated a conversation, those were the two issues you had to bring up right away: "We don't know how this disease is transmitted, and it does seem to be a disease with an infection component, although we think it has to do with sexual transmission."
Hughes
You presented it as a disease of male homosexuals?
Lewis
Yes, that it was gay men that were getting it. And I didn't get any responsiveness at all from any of those agencies.
Hughes
What reasons did they give?
Lewis
Oh, limited funding and that the disease wasn't their mandate. There's a whole litany of things that people can say about those things.
Simón Guzman
LewisThe piece that I remember first was in relation to Simón Guzman who lived in the East Bay. He was discharged from Moffitt Hospital, UCSF, as I recall, over Christmas of '81. I think he died early in '82, like January or February. But he did go home for a brief period, and I was trying to find community resources. He lived alone, although he had a brother who was also an illegal alien who lived with him or very close by--I think with him. No one in his family knew that he had this disease. They knew he had a disease, but they didn't know that he was gay; they didn't know it was "the gay plague." It was really important to him to keep that secret.
But at the same time, if you were calling VNA [Visiting Nurses Association] or public health or something, to provide support, they had to be made aware. So it was very difficult to find support services for him.
Fear of Infection
HughesNow, it was Christmas, 1981. Do you remember thinking that Simón could be infectious, that he might be a danger to you and others?
Lewis
Oh, absolutely.
Hughes
So despite all the other theories about etiology--poppers, immune overload--you were thinking the cause could be an infectious agent?
Lewis
We didn't know. This was around the time that I mentioned to you where I woke up one morning with a fever in the middle of the night and thought, I've got it.
We were conscious and careful about infection control. I would go in Simón's room and sit on his bed and hold his hand, but I would wear an isolation gown. And as soon as I got out, I would wash my hands immediately. Because you didn't know. And shades of grey of not knowing are very hard.
The administrative people in community agencies, who are well educated, all understand that. But the home health aide who goes into the home and actually does the work is the one who is scared to death. She's the one who needs support, who maybe has never known an openly gay person, who has heard about diseases that float through the air, that you touch somebody and you get it.
Hughes
Plus, isn't it true that in some KS cases, patients look pretty awful?
Lewis
Yes, the lesions.
Hughes
Wasn't that particularly true of Simón?
Lewis
Simón did have some bad lesions. So yes, people could look really bad. So you could understand why a community agency wasn't ready to undertake this new challenge.
Chair, Community Education and Support Committee, KS Foundation
An Organizational Meeting, Spring, 1982
HughesWell, as of September, 1982, you were chair of the KS Foundation's Community Education and Support Committee, which before had been called the Patient Support Services.
46. Committee Meeting Report: Community Education and Support. September 2, 1982. (AIDS History Project Archives, Special Collections, UCSF Library, AIDS/KS Foundation Records, 1982-1986, box 1, folder: Meeting Reports, 8/82, 9/82)
Lewis
Well, what I remember is Marc called me and wanted me to attend a meeting that night or the next day at Everett School over by 18th Street in the Castro. Fliers had been put up in the Castro about an organizing meeting. They were looking for people who wanted to help people who had the disease. He asked me to be there, and so I went.
Hughes
Is that it? [shows announcement of a meeting]
Lewis
No, the meeting that I'm talking about was asking people to help.
Hughes
Appealing particularly to gay men?
Lewis
Yes. It actually sounded more like what Shanti evolved into, where they were giving hands-on help to people with AIDS.
[telephone interruption] Cleve Jones and Marc and I and somebody else were sitting up on the stage, and these men started gathering. There were probably fifty guys.
Hughes
What year?
Lewis
That would have probably been in the early spring of '82. It was early. It was before there was an education committee or an active KS Foundation board and services that were community-based. Marc got up there and started talking about the KS Research and Education Foundation. It was going to be for education and research, and I'm having trouble remembering the third arm.
Hughes
Patient support?
Lewis
Yes, patient support. He talked a little about his thoughts about the foundation, and then he said, "And now we're going to divide up into subgroups, and I want you each to pick the topic you're
I had no notion in the world that he was going to do this. I didn't quite know why I was at this meeting. And do you know, of those fifty guys, probably forty-eight of them went into my group. I mean, they all wanted to do patient support.
Hughes
Because they wanted to help the people they knew.
Lewis
Exactly. If one had been forewarned, one might have been prepared when they all showed up in my corner! [laughter]
Hughes
What did you do with them?
Lewis
I punted. That was the very beginning of the hotline. I can remember Helen and me working on that practically in the middle of the night, trying to answer the phone lines. But at that meeting when all these guys showed up, we just brainstormed about, "What would you like to see happen? Do you have people in your life that you're concerned about who need help? What kinds of help do they need? What's reasonable to expect that we could do? What would be the best thing that could happen if we had all the resources in the world?"
That meeting was the beginning of the AIDS Foundation as it evolved into its current form, although it's gone through thousands of permutations.
Patient Support Services
HughesYour group became the foundation's Patient Support Services Committee?
Lewis
The patient support group, and then there was an education group and a research group. But they didn't stay that formally separated, because people served on more than one committee, and the committees overlapped. Like I was interested in education as well as patient support.
I don't quite remember the evolution of Shanti--if there was a patient support group at the AIDS Foundation which duplicated some of the service that Shanti provided.
There must have been, because there are minutes of a September, 1982 meeting. The notekeeper, Rick Crane, wrote, "...informal 'coaching'/emotional psychosocial support services provided via drop-in to KSF office."
47. Ibid.
Lewis
So Shanti was already formed by this point.
Hughes
So Shanti must have been formed.
48. According to a project flyer, in 1981 "Jim Geary of Shanti Project--a small, already-existing group of volunteers providing support to people with life-threatening illness--[ran] the first support group for gay men diagnosed with [a] mysterious new cancer." (Shanti Project: 1981-1991. A Decade of Caring and Compassion. [n.d.] Author's collection.)
Lewis
Okay. Because I think the night that we had this other meeting, there was no Shanti, or we did not know of it. It's just very hard to sort of reconstruct this accurately in the time frame.
Hughes
The KS Foundation was founded in April of 1982. That's when Frank Jacobson, Marc Conant, and Richard Keller signed the incorporation papers.
49. Conant's oral history in the AIDS physicians series, pp. 121-122.
Lewis
Frank Jacobson was in the room when Marc drew the map of the U.S. And that would have been prior to April of '82, maybe January or February. Frank eventually died of HIV.
Hughes
Was he sick then?
Lewis
No.
Hughes
Did you have a special friendship with him?
Lewis
I had one with Frank and his wife. [tape interruption]
Hughes
What was done about the potential overlap of the services with Shanti?
Lewis
I can remember having lunch with Jim Geary and I think Helen, and talking about the services that they were offering there already. [telephone interruption]
Mitch Bart was an important player in all this. He was originally a volunteer who became, I think, acting director of the KS Foundation. He is still in San Francisco, not in AIDS directly anymore. He would have good information about how things evolved.
I was one of the people really concerned about avoiding duplication of service, my same premise of not reinventing the wheel. We had limited resources, and I didn't want us to expend them trying to do something somebody else was doing. But the reality is when you're developing these kinds of organizations, there's a real need for and feeling of ownership because people want their thing their way. So it's difficult, but I think we were pretty good at not overlapping.
It was clear that Shanti was evolving into a primary patient support mechanism, and so we, the board, and those of us in the patient support group per se, felt that it was most important to support Shanti in doing that work. I don't remember the exact people who felt strongly that the foundation needed to have support services for patients. I can remember that being contested, the way things were going to go. The AIDS Foundation did, in fact, develop some support services which they still maintain. What evolved was social support in terms of helping people get Social Security, going through the bureaucratic system, that kind of thing, not direct care services in the home.
When all those men at that meeting came over to my corner, they wanted to put hands on and help people in their homes. And that's what Shanti evolved into, and that was what in my mind was patient support. But as the foundation evolved, it became clear, of course, there were many other needs that people had.
The Foundation's Hotline
HughesWell, talk more about the hotline. Were you and Helen initially answering the phones?
Lewis
Well, we only had certain hours. I remember we had an office upstairs on Castro and 18th, the second story. There was one room that we had as the phone answering service, so we had to set up a schedule and get people volunteered and have educational meetings for them. The hotline was answering questions and providing information about services, which were limited.
There weren't a lot of calls initially. I can remember sitting for whole evenings and having no calls. For one thing, it wasn't well advertised. For another thing, there just weren't that many people in the city impacted by the epidemic at that point.
Hughes
When did the calls increase?
Lewis
Oh, as the epidemic expanded, it got busier and busier. One of the reasons that I began to help with the hotline was I had served on the child abuse hotline in Marin when I was working on my master's. I did a year or two working on that line. I'd been through their trainings and had their training guides. I had that information to share with people.
There was only a very short period of time when there were just a few of us who were working on the hotline. Very quickly, there were other people who said, "Oh, I want to help," and pretty soon, somebody else was running the phone line and somebody else was doing the training. The point was to let people grow and take on new things.
Hughes
Were the calls for psychological support as well as for information?
Lewis
Yes. The calls fell into several realms. People who already had HIV, who were already sick, were usually hooked up with Shanti already. They generally got psychological support from their Shanti volunteer so they didn't have a need to call. People who were newly diagnosed would call. A lot of the calls were from people in the community who were just scared, or saw something and were afraid that it might be a KS lesion, or who had heard about this disease that was striking gay men, and what was that about and what caused it?
Of course, we had very little information in early 1982. There wasn't a lot you could say about what caused it, or about transmission. So mostly you would try to calm people and let them know that there was work going on, and there were places where they could help if they wanted to help, in terms of coming to the foundation or Shanti, and that there were people who wanted to help them if they needed help.
There were a lot of things missing at that point in time. The San Francisco model of comprehensive AIDS care was just beginning, so at that point it was basically Shanti and the AIDS Foundation. Shanti was Jim and a few volunteers. Then the AIDS Foundation with the few of us.
The Foundation's Expansion
LewisBut the AIDS Foundation did grow quite fast. We were in the three rooms on Castro for a little while. Then we moved over to the PG&E [Pacific Gas and Electric] building where we had a much bigger suite, and then we moved over to Valencia [Street], and then finally to where the foundation is now. I remember, in the move to Valencia, the members of the board of directors were so nervous taking on the responsibility of paying all that rent money every month. Where were we going to get it? That was when I was still on the board. The foundation started in Marc's office in a certain sense, but the first official office was on Castro.
The Foundation's Speakers Bureau
##
LewisIn terms of education, it started out with Marc, and then I started doing a good bit. Marc did a lot of community presentations. As a physician, he could speak to other physicians with credibility. Nurses didn't have credibility. So he would be the one who would give the talks to physicians.
The Speakers Bureau actually started real early on, probably mid-1982. I was one of the key people who did a lot of speaking locally.
Hughes
Meaning San Francisco?
Lewis
San Francisco and the Bay Area, so it might be the East Bay. I don't remember ever going to Marin. But people would call and say they wanted a speaker, and it was most often educational programs that I did, or educational programs for medical people. It might be at a nursing home--I can't remember actually doing any of those until later on, because they didn't envision themselves as needing it. But hospitals. It was hard to separate what I did as a member of the AIDS Foundation as opposed to doing community outreach for UCSF as a nurse educator.
Hughes
Did you do it differently in each role?
Lewis
No. And, in either case, I would usually be introduced as a nurse educator from UC. I was supported by my boss and Helen and the Department of Nursing Education and Research to do those presentations. That's good PR for the university.
It was part of your job, so you were getting paid for some of this?
Lewis
Probably, if it was during work time. I was on a standard schedule; I was on a salary. If I had a class at ten o'clock at PMC [Presbyterian Medical Center] or wherever, I would get paid to go and do that.
Hughes
What about the evening presentations?
Lewis
No, that was all volunteer.
Cleve Jones
HughesDo you want to say anything about Cleve Jones?
Lewis
Cleve was a very articulate, bright gentleman. He ran for the [San Francisco] Board of Supervisors a few years ago, and I haven't heard much about him since. He was the person in government whom Marc was connected with, and consequently I was connected with him, too, as part of the board and the foundation.
Cleve came to meetings more than Marc did, but he was very involved in lots of other things. He had been Art Agnos's person in Sacramento. Agnos at that time was in Sacramento, and as I recall, Cleve lived in San Francisco but spent much of his time in Sacramento, as one of Art's primary assistants. So he knew a lot of players statewide and had a lot of very strong connections, so was powerful in that sense. He later went on to do the AIDS Quilt Project, which is an example of how far-sighted he was.
Hughes
He was furthering Conant's aim of money-raising and lobbying at the state level?
Lewis
Yes.
Hughes
He was the principal link with Sacramento?
Lewis
Yes, he was a very strong link with that whole scene in Sacramento: the state and money and power. He had a lot of connectedness with power brokers.
Patricia Norman
HughesWell, Randy Shilts says that there was some reluctance on the part of Pat Norman, who was, as you know, director of the health department's Office of Lesbian and Gay Health, to support the foundation's education program.
50. Shilts. And the Band Played On, pp. 122-123.
Lewis
I don't remember specifically. I've known Pat over the years, although I haven't seen her in many years. I certainly do remember the office of gay and lesbian health, which was probably the first such office in the nation. Pat, as I tend to do at times, tried to "make nice." She's a black woman, lesbian, who's a grandmother now. I remember her as trying not to inflame any part of the mix in San Francisco.
She had been empowered, but only by empowerment that she had created herself, as opposed to gay men, who wanted things to happen now. I think Pat grew a lot through the AIDS epidemic, and later became much more of an outspoken advocate than she was in the early years. That office was real tenuous, and its funding was always a question, and she had to be politically supportive of what was going on in the health department.
Attitudes to People with AIDS
HughesDid you respond differently to patients with AIDS than to patients with other problems?
Lewis
I wouldn't say differently. I did feel a certain empathy for them, having been hospitalized as a closeted lesbian in years past. I remembered what it was like to be afraid that somebody would walk in if we were holding hands, or that I'd use the wrong words, and that statements which were too intimate might be overheard. It's terrible to live your life that way, and I remembered what that was like.
If you have an interesting disease and you're hospitalized in a research and education center like UC, you are presented at rounds and many details of your personal life are exposed that would not be exposed if you were in for a more routine disease, or were in a run-of-the-mill community hospital. In the latter
Hughes
People with AIDS at UC were being exposed in this way in the early days?
Lewis
Yes. I wouldn't say they were all being presented, but the word would get around that people had the diagnosis. It wasn't that it was advertised or that it was presented inappropriately--although I'm sure it was inappropriately presented at times. Someone found that on one of the units there was a list of patients posted who were HIV-positive. I can remember writing a letter to the head of whatever department it was and saying, "This is really inappropriate. You can't be categorizing patients by virtue of their diagnosis."
Hughes
How did patients feel about it?
Lewis
If they were aware, they often felt really bad. But the reality was that they could feel that they were being singled out and stigmatized, but there wasn't a lot they could do about it.
Hughes
Do you think that was the response? Because I can imagine a Bobbi Campbell saying, "This attention is great, not only because I like attention, but also these people are interested in what I have, and maybe they're going to be motivated to investigate the disease."
Lewis
I remember a conversation I had with Bobbi after Marcus presented him at rounds. I stayed afterwards and spoke with him about the experience. I think he was a little uncomfortable; everybody was putting on their gloves and prodding at the lesions--although putting on gloves was appropriate. I would have put on gloves, too, if I were going to prod the lesions. But that makes the patient feel more vulnerable. And here are all these people who walk in in their white coats and their three-piece business suits, and you're sitting there in your skivvies while they look at you in whatever way they want to look.
It wasn't unique to Bobbi or to AIDS, but there often is very little eye contact in that situation. People avert their eyes. It's very dehumanizing. It's a way that medicine is moving away from, and they are often really trying hard to be more personal, before the physician invades a person's space in the way that has been done traditionally.
Reactions of Patients to an AIDS Diagnosis
HughesDid most people equate a diagnosis of AIDS with fatality?
Lewis
It's hard for me to answer that, because I wasn't interacting with people at the time that they got the diagnosis. I had friends whom I was very close to that I can speak to, but I can't speak to people more generally. In my experience, people tended to feel it was a death sentence.
We hadn't heard from one of our friends in a long time. He was the kind of guy that we would often see at the Gay Freedom Day Parade, and we wouldn't see him for another year until he was in the parade again. We had first been friends back in the sixties in Florida. He called me one day sort of upset, but didn't mention anything about being sick. I went and picked him up, and he lived with us for three or four weeks. He was down and out and having a hard time. I said, "You've lost weight," and he said, "Oh, yes, I've been dieting really hard." He'd always been a heavy man.
While he was with us, I remember talking with him about this new disease. He was very much South of Market: he was into lots of heavy sex, and S&M [sadomasochism], and all kinds of things. I remember saying to him, "You really need to be careful. You need to, at the very least, wash your hands." And he said, "Angie, where I have sex, there is no water."
He left, and we never heard from him again until Cliff Morrison held him in his arms when he died. I know now he was there at the house saying goodbye, but I didn't know it at the time. I wasn't aware of wasting then and didn't spot it in the way that I would spot it now. I feel certain he knew he was dying, but he wasn't ready to say anything.
Hughes
Helen expressed concern about the sexual history that was going into patient records, because many people have access to them.
51. See Schietinger's oral history in this series.
Lewis
Practically anybody who wants to pick them up, or at least in those days.
Patient Charts: Confidentiality Issues
HughesWas patient confidentiality a concern to you?
Lewis
Confidentiality was a concern to all of us a lot of the time. In those early days, there was some sense that you could judge something about this disease by virtue of the number of sexual partners one had had, or the type of sexual practices. Or that research would glean something from this. If people did certain things, that they would get it, or if they avoided certain things, they wouldn't.
I can remember going to a meeting, Mike Gorman was there, and the Englishman--
Hughes
Andrew Moss.
Lewis
Okay, it was Andy's study. Gorman was his first assistant. Andy used to come to these little meetings--
Hughes
The KS Study Group?
Lewis
Yes, he was part of that. So that's where I met him. He was going to do a study about sexual histories. I dragged Shirley along. We were both going to do interviews with patients, and we did do some. There was some feeling that there were answers there somewhere in the sexual histories. Andy composed a thirty-page questionnaire. It went into everything in your whole life that you'd ever done. I can remember they were looking at things like swimming in the Russian River; they were looking anywhere and everywhere for what have these people done?
Andy was doing a research study, so people were coded and it was confidential. But the fact is in those days, because we didn't know the etiology, people collected a lot of information about sexual history that is not collected much anymore. If you or I go to the doctor, he doesn't ask much of anything about our sexual history. There might be a general question on a checklist about sexual impotence, but nobody asks the details of what we do in the bedroom.
People began to ask those kinds of details, and they didn't have a format, so they would write notes that would just go on and on. You can imagine how interesting people found it to look at. If you're a medical student and you're assigned to X ward, and there is one of these patients there, don't you think you might find a way to read that chart? Yes, you do. And that happened a lot.
Now, eventually--primarily related to the confidentiality of HIV antibody test results--a separate section of the chart was kept. That had to have been after '85. In the days that we're talking about, there was no thought of a separate chart. That wasn't anything any of us had a concept of. So all that very private, very detailed information was kept in the patient chart. Now, there would be some patients where the doctors weren't as aware or didn't have the interest or didn't feel it was important, where there wouldn't be much sexual history recorded. But then there were other times when interviewers got very involved, particularly with individuals who had had 500 or 1,000 or many thousands of sexual partners. They would get into very detailed histories, and sometimes the patients just wanted to talk about it.
It was an issue, because there wasn't a way to keep the information confidential. And I don't know that patients, when they tell one health care provider something, have any awareness that this information has the potential to go far beyond that individual.
Hughes
You don't recall anything concrete being done to increase the security of this information?
Lewis
No. To the best of my knowledge, nothing was done at that point in time. Once the test results started to be known, the concept of a private chart evolved.
Networking
HughesIt's important to record how information was exchanged.
Lewis
Networking was very important. As each organization evolved, people developed a sense of ownership of a part of the epidemic, and a guarding of that. And then before too long, people had jobs or were invested in other ways in the epidemic. I thought it was really important to avoid duplication and to interlink people. One of the things I tried to do a lot was to connect people together, because I really do believe strongly that no one organization is going to solve all the problems or knows everything.
The people who were significantly involved in HIV organization and education were a small enough group, as I've mentioned, that in the early years, at least the first six months or a year, I knew damn near everybody who was involved in San
I met persons living with HIV at the meetings, and they were the people that I called to be on panels. When I would do educational programs, whether for the board or for UC, I would always try and take at least one person living with HIV with me, because I'd rather have them talk for forty minutes than for me to stand up and do a didactic for an hour. The audience needs to get a sense of the humanness of the disease.
I think networking was really important in it--in San Francisco and nationally, where it was important to connect with community people across the country, and with Jim Curran and the folks that were at the National Institutes of Health.
More on the KS Study Group
HughesWas the KS Clinic and Study Group the coordinating center for the early medical response to the San Francisco epidemic?
Lewis
We talked earlier about how at the first meeting I went to of the KS Study Group, there were maybe eight or ten people. Within a year, there were probably forty people, maybe fifty or sixty at a good meeting. There were periods of time when Marc would come out with an agenda and you'd know what the topic was going to be. There were other periods when there was no pre-announced topic because Marc didn't have any support to do the secretarial work.
Hughes
His office staff did it sometimes?
Lewis
If they had the opportunity, they did it, but then there were lots of times when they couldn't. So it was on-again, off-again.
That meeting was attended by the medical people from the university, the community, and the health department. It began to be attended by folks from the AIDS Foundation and Shanti and many of the community groups. I made a point of trying to get to the study group, because it was where I connected with people and was able to say, "Hey, what about this? What about that? Can you do this?"
Hughes
So there was time for informal exchange?
Yes, at the end of the meeting, after the more formal program was over.
Hughes
The meetings consisted of formal presentations?
Lewis
Generally, there was a speaker. There was an opportunity for anybody to make an announcement. So people would say, "Oh, we're having an educational program this date and time--"
##
Hughes
I heard that as time went on, there wasn't a need to continue patient presentations. People knew how to identify KS.
Lewis
Right. Instead, it might be Jay Levy talking about what his latest research was. Sometimes we'd get a speaker from the East Coast who was in to do rounds for the department of immunology or something. Marc would often have him come over and do a presentation for the study group, which would be a lot more intimate than what rounds would be, where there were several hundred people. An outside speaker could meet with a lot of the key players in AIDS research at one time and location.
So the presentations moved away from patient presentations fairly early, and got into much more research-dominated topics. I can remember talks where I practically fell asleep, because it was so "out there" for me personally. I just didn't have the knowledge base to comprehend some of them.
Hughes
So it was hard-core medical science?
Lewis
Oh, yes, at times.
Hughes
Because all these people representing different pieces of the AIDS pie met in one place at the study group, wasn't it a chance to organize?
Lewis
Yes, although the organization was more often around educational issues than it was around political issues.
Hughes
Was there any other occasion like that in those early years?
Lewis
No, not in the really early years; there was nothing else. That was the one place and time a week that everybody interested in AIDS came together. It was the opportunity each of us had to talk with each other. Because there was this open period for announcements, you could say what you wanted to say. Also, there were times when Marc would have presentations by local organizations that were providing services or whatever.
I'm having trouble in terms of the time frame--what time things moved into more formal presentations. I'm sure it was within the first year or year and a half that we moved out of patient presentations.
Patient Zero
LewisWe heard all about Patient Zero when it was still on the drawing boards.
52. According to Shilts, Patient Zero was Gaetan Dugas, a Canadian airline steward whom Shilts proposed might have initiated the AIDS epidemic in North America. The idea has been discredited. (Shilts. And the Band Played On, p.459.)
Hughes
Pretty exciting.
Historical Importance
LewisYou had the sense of, I'm in the middle of history.
Hughes
Even then, you did?
Lewis
Oh, yes, absolutely. You just felt, This is a once-in-a-lifetime thing, and I'll never experience this again. You just knew that what was happening was really important and would affect the world.
Hughes
What was making you feel that way?
Lewis
The epidemic was just growing so fast, and the numbers were growing so fast. We all had hopes that they would be able to find the virus, and once they did that, that then we'd have a vaccine, and this would be over.
Was that the assumption: find the virus and the vaccine is the easy next step?
Lewis
Yes.
Hughes
Nobody thought making the vaccine was going to be a problem?
Lewis
I don't know. I had never been involved in a vaccine being made. I grew up in an era, as a nurse, as a human being, where doctors somehow could figure things out, although reality doesn't necessarily prove that out. I think because of my history and my age that I had this trust that this problem will be solved.
You did have a sense of living in history. I really remember feeling, even quite early on, that this disease is bigger than all of us.
Coordinating the KS Clinic and AIDS Activities at San Francisco General
HughesWhat happened when AIDS activities really began to take off at San Francisco General?
Lewis
They would come over to various meetings. I think we changed the day of the KS Study Group to coordinate with their schedules. I don't remember if it started on Tuesday and ended up on Wednesday or vice versa.
Hughes
The clinic met on Thursday morning from nine to eleven, and then the study group immediately followed it. It was dermatology space.
Lewis
Yes, it was in dermatology space; I remember that. In the early years, the clinic was earlier. It was at nine. I know that the clinic was manipulated vis-a-vis what was happening on [Ward] 86 [the AIDS Clinic at SFGH], because routinely, not the nurses, but Paul [Volberding] and Donald [Abrams] and Connie [Wofsy] would come over. They were the three from General who most often would attend the meetings. As Paul became more and more nationally and internationally prominent--and that was after '84--the meetings changed as Paul was no longer able to participate very often. He would come once a month or when his calendar allowed. He would share things that were going on nationally, and this is what he'd done over at Bethesda--
Hughes
So the meeting had a larger perspective when he came?
Yes.
Hughes
Well, one thing that was giving him perspective, and that started fairly early, was the drug trials. Do you remember there was an alpha interferon trial that began as early as 1982?
Lewis
Yes, '82.
Hughes
He tells some funny stories about having to deal with the NIH committee.
53. See Volberding's oral history in the AIDS physicians series.
Lewis
Yes, he was. He was right out of his residency, and so was Donald.
Rivalry between Conant and Volberding
HughesThe only one with any seniority was Conant.
Lewis
Yes. And Conant is the one who lost out.
Hughes
Why?
Lewis
I never have known. Well, for one thing, they were oncologists, so they had a broader perspective of disease than Marcus did. And yet, KS was a major piece of this in the early years, and it could have gone the other way. It could have become more focused on KS, at least for a while, than it did. That's part of what Marc talked about at Langley Porter that day, although he, of course, didn't speak directly of Paul or Donald. He's not going to do that; he's got more class. But there were things that went on.
Now, whether it was that Marcus didn't want to move, that he was fighting to keep AIDS activities at UC on the hill
54. The main UCSF campus is built on the slopes of Mt. Sutro.
Hughes
I know he was.
Lewis
Yes, he wanted that, I'm sure.
Hughes
Yes. I don't know whether he was invited or, if invited, he would have gone to San Francisco General.
I have no idea. My sense is he's used to having a nice office space, and he wouldn't fit at General at all. General is a scroungy space. There is nothing accommodating to providers--it's a county hospital. UC is a university research center. They are worlds apart in many, many ways, part of it being the very patients who go there. Marc had a practice at UC established long before AIDS and a large group of patients who would have been mortified to go to General. They were not going to go down there.
And the kinds of patients he attracted in the HIV epidemic were similar patients. They tended to be well educated, well moneyed, empowered. Now, they happened to be gay men, but they could have easily been matrons from a fancy neighborhood. So it would have been, in my mind, unthinkable for Marcus to pick up things and move to General. I think that would have been saying--
Hughes
Donald started at UCSF and moved over to San Francisco General. Volberding was always at San Francisco General, in terms of his position as head of the Division of Oncology, although--
Lewis
He had done his residency at UC, hadn't he?
Hughes
Not his residency, but a fellowship. Why were they willing to work at a county hospital?
Lewis
Well, think about it a little. Paul was young. He was new at his practice. He wasn't established. He didn't have well-known credentials, where Marc had national connections in the dermatology field. The General is a kind of high-power, high-energy place that young physicians often enjoy. They feel altruistic. You give a lot of yourself; you put in incredible hours. His wife, Molly [Cooke], was over there.
When I was a young nurse, I wanted to be in a big hospital. I wanted to be in a county hospital. I wanted to give to people. As you mature and as your practice grows, your focus changes. Marc had already gone through that early time in his life, and would, I think, have had no interest in going to General. Now, I don't know any of that to be a fact. It's just my assumption. I can see that it would be very exciting for Paul. He was a young physician. He got the opportunity to be head of oncology for a county hospital in one of the major metropolitan areas in the United States. It was very prestigious, I would assume, to have that position. And then all that evolved afterwards, of course, far exceeded his expectation. I've heard him and Molly talk about that at different times. They had no idea what life was going to hold for them.
Potential Career Risks
HughesDid the physicians involved with the epidemic in the early years feel that they were taking a risk in terms of their own careers? It could have been for many reasons. First, it was a stigmatized disease--
Lewis
That's it. That's the major thing. When you had a physician come speak, there would be some mention within the first three minutes of his wife and children.
Hughes
"I'm not one of them."
Lewis
Exactly. They did a great deal of distancing of themselves. It would be worked in very casually--
Hughes
But the point was there.
Lewis
Yes. So I think that piece they saw as potentially damaging.
I think they felt they were taking a certain risk with their careers. There were only a few where it could have had that impact: Paul and Donald and Connie are the three that come to my mind within the UC or the General family. But I never heard them really articulate that fear. I think they all felt that the work they were doing was really important and needed to be done, and I didn't get a sense of their holding back or of being concerned about their careers. They were young, and young physicians have to look at their careers, particularly if they're academics.
Staff Commitment
HughesDid they have a sense of idealism: they were in this because it was an important humane thing to do?
Lewis
Yes. I think they all did. I always had a very positive feeling for the physicians and for the work that they did. I just finished working on Ward 86 for four years; I left in January [1995]. I was constantly in awe of not just physicians but the care providers, the nurses, the people who were at the reception desk--everybody, I felt, was really there for the right reasons and gave a lot. And it is getting harder, in this day and age, as more and more patients are substance users and have very difficult histories that made them less amenable.
In the early days, people who were the patients, '81 to '84, for the most part looked a lot like the care providers, and had the same life history. So there was a sense of connectedness, even though Paul was straight and they were gay. That's not true these days. I have great respect and regard for all the providers there. I think particularly Paul and Don and Connie just were incredible over the years.
Dealing with Informed Patients
HughesWell, you mentioned being a bit intimidated by well-informed patients, and that hard-core science was not something that you were responsible for. What did this do to your relationship with patients?
Lewis
Oh, a lot, I think. Certainly through mid-'82, maybe late '82, you could reasonably aspire to have read every AIDS-related article that had been published. And I read along with everyone. There were no books but there was a lot of background information. There was a lot of immunology; there was a lot of epidemiology; there was a lot of information that wasn't specific to AIDS that theoretically physicians already had that patients didn't have. So a patient aspiring to become informed had a wealth of information that he needed to assimilate.
But in terms of information specific to AIDS, it was very reasonable that patients and providers had read the same things. It must have been through the Research and Education group [of the KS Foundation] that there was a bibliography on AIDS put out--
Hughes
Right, there was.
Lewis
So, we all kept up with that. And there was the MMWR, so you subscribed to that.
Hughes
And patients did?
Lewis
Oh, yes. Anybody could subscribe. For many patients, AIDS wasn't just their Monday through Friday eight to five life; it was their twenty-four hour a day, seven day a week life. So when they weren't down at UC library reading, or reading their own publications that they got at home, they were at the AIDS Foundation volunteering, or they were over at a neighbor's taking care of him, or they were over at General at their doctors' appointments, or they were over to see Marc at the KS Clinic and
Paul and Don and Connie were immersed in it, but at least they had some outside life. Paul had his wife and kids, and Donald had a partner, and Connie had her family. So yes, they were immersed in it, but they did go home. I think it was hardest on Donald, since he was a gay man and had many friends who were ill. The patients could become obsessive about it. They could really wear you down. But for the most part, they recognized that providers needed to take care of themselves some.
What was provided for physicians to keep them informed was the KS Clinic and the study group, the KS Foundation bibliography and the MMWR, and they had a lot of connectedness among themselves when they needed to. But the information just got more and more massive.
Alternative Treatments
LewisThe other piece that began to happen, as it does in any disease, I guess, is that there began to be a lot of alternative treatments. People were into macrobiotic diets or meditation, Louise Hayes, all of that kind of thing. That was an area where I think most physicians were less well equipped to deal with and less informed. Patients would come in claiming to have heard that this was going to do X, Y, or Z--raise your T cells or whatever. That was followed in the BAR and the Sentinel and those kinds of publications.
Actually, at UC or at [Wards] 86 and 5A, those kinds of places, they always had those gay press papers around and made a point of having them there for people to look at. It was very common to see providers looking through them and trying to keep up, because that was the piece where I think they felt unequipped.
Hughes
Physicians were being asked by their patients for advice about alternative therapies?
Lewis
Yes, exactly, on things that had appeared in the gay press, but that had not appeared in the mainstream literature.
Hughes
Did you have to deal with alternative therapy?
Lewis
Oh, yes.
How did you handle it?
Lewis
I'm pretty supportive of alternative therapies, and really believe that people ought to investigate and try what feels right for them. I don't see a conflict necessarily between traditional and alternative therapies, and I think that they can work together. I think a lot of what happens in health is in your head, and if you believe in something, if you really have faith in it, that you should try it.
I've always been pretty open to it. Well, I'd been in OB for years. I'd worked with La Leche League and with women doing alternative birth, and I had worked a lot in trying to empower women in the birth experience. Well, that was a good corollary for helping empower people with HIV in terms of their disease process, and provided me some experience in dealing with that.
Hughes
It's amazing how your past experience was so helpful.
Lewis
Yes, it's really fascinating.
The Epidemic's Impact on Physicians
HughesWell, let's talk about the impact of the epidemic on physicans. Maybe start with your perceptions of what the epidemic has meant in terms of authority. Do you see changes there in terms of the patient, the physician, decision-making, knowledge?
Lewis
In terms of authority: that's an interesting question. I haven't thought of it in that terminology. I think there have been major changes, and I think HIV has helped empower patients. The only patients that I really was aware of as exercising their own power previously were certain breast cancer patients who had worked through the American Cancer Society. I had been to a couple of programs on colostomy management that had had patient involvement. And, of course, in birthing, particularly with the home birth movement, women and their partners were active participants and were making personal choices.
I had to do an externship when I was in my baccalaureate program, and I did it with a home birth program in Seattle. There was only a physician consultant, and all of the work was done by lay midwives. We actually set it up so that the lay midwives could go to UW [University of Washington] and get experience there in the delivery room.
So I had been in life experiences where patients were very empowered, and this was no conflict for me to be dealing with patients who felt themselves to be empowered or wanted to empower themselves. It was not necessarily true for most providers.
Hughes
Was that threatening to them?
Lewis
One of the reasons people traditionally had become physicians was that they wanted to have a certain sense of power. It was rarely articulated as one of the reasons one does it, but I think that control and power are part and parcel of the role.
I think that as HIV came about, people who had previously been executive vice presidents of various and sundry corporations in the financial district were getting sick and were very much used to being in control, being in power, and making their own decisions, and they weren't about to sit back and wait. And that was threatening to providers to a certain degree. I think the smart ones got over it really fast. For one thing, these same men were often in their social circles, and so they were peers in a certain sense, although they weren't all academicians.
But it was certainly different for physicians, because their patients, over whom they had control, in the past tended to be older, people toward the end of their lives. We all have to face that we're all going to die, and so there is nothing particularly threatening about that. People haven't felt the need in the past to take control of their dying in the way that they are now. So physicians could be peers or colleagues or whatever and still have that power and authority over people at the end of their lives.
##
Lewis
Patients felt a need to control many aspects of their disease process and got into very complex decision-making trees about the kind of medication and when it should be started and what the dosages should be. Most physicians had never envisioned a patient having that kind of interest or knowledge.
So I can imagine it would have been threatening to physicians. It wasn't something that I heard them talking about. The reality is, our roles are such that physicians are not going to talk to me about it. Some, like Donald, became very much a proponent of holistic medicine and alternative therapies, and now he does lectures all over the world on that topic. So physicians' view of the world changed over because of their experience with the epidemic.
John Stansell, AIDS physician at SFGH, is a good example. Having lived through the death of his partner, he developed views about assisted suicide and the dying process, and what the role of the provider is in that. All of them--all of us--had our lives fundamentally changed.
The Epidemic's Impact on Nursing
HughesPlease comment on what the epidemic has meant to nursing.
Lewis
I think the epidemic has given nursing great opportunities in that there haven't been answers, there is no cure, and it's a disease of caring. It's not a disease of curing at this point. And nurses are good at caring. That's what patients look to nurses for. I found that for the person living with HIV, it was nursing very often that was part of the key. So I think nurses have been empowered by virtue of the epidemic.
I think the nursing profession will be enlarged by virtue of people coming into the profession because of their experience with loved ones or friends with HIV. There's a program at UC [NP] for people who have a degree in some field and are moving into nursing. It's a second-step kind of program, and you can come in with a degree in fine arts and get a master's in three years. Of thirty-three or thirty-five people that were accepted in the program the last year I was there [1994], three of them, I believe, came in specifically because they had been impacted by AIDS and wanted to devote their lives to caring for people who were living with the disease. That's a relatively new phenomenon.
The other thing is that health care is moving out of hospitals and into homes. Hospice is a tremendously growing area of health care, and that's a nursing-dominated piece. That used to be in hospitals or in separate facilities of some kind, but now in America for the most part, it's done in the home. Actual hour-to-hour care is provided by the family or by a helper of some kind. That helper, a certified nursing assistant [CNA], is trained by nurses.
The Inpatient Unit at San Francisco General
HughesIt seems to me in regard to 5B that nursing played a particularly instrumental role. Look who organized it--
Cliff [Morrison].
Hughes
How usual was it to have a nurse organize an inpatient unit?
Lewis
Very unusual. That was a totally new model that combined a number of elements from past models and some that were completely new. I think an interview with him, or extensive readings of his writings, is really crucial, because he did so many things that were innovative. I think we spoke of some of those last time--support groups and team work where everybody, including the housekeeper, was included. Doing rituals is something that's evolved as part of AIDS care, in terms of a unit recognizing the deaths that have occurred over the past month or whatever, and having a way to honor that and let it go.
All of the people who worked there were volunteers who were there by choice. They have almost no turnover. I don't think they lost a nurse for four years or something like that. It was incredible, just incredible.
Hughes
And it was not easy work.
Lewis
No, oh, it was very tough. It's getting tougher because AIDS units are facing the same strains and stresses that all health care facilities are facing, and the patients are so much sicker and in the hospital for very brief periods of time when they are incredibly ill.
Hughes
The unit [5B-5A] is and was a nursing unit, which was originated by nurses in the schema that you've been describing. Has that happened elsewhere, either in connection with AIDS or not?
Lewis
No.
Hughes
Why did it happen in AIDS at San Francisco General? The unit could have been planned by the hospital administration, or by a group of physicians, or whatever.
Lewis
Right.
Hughes
But it was never that way.
Lewis
No. I'm not exactly sure of the mechanism within San Francisco General that allowed that to happen. I wasn't privy to that. I know that at Flo Stroud's meetings, where the unit was being planned, that Cliff was very purposefully chosen. He was already a head nurse at General, and was known as a leader, and had been very powerful and effective in the positions that he'd had.
I remember being just a little jealous, thinking, "Oh, that would be a neat job. I'd really like to run that unit." [laughs] But I wasn't a General person. They didn't do an external search; it was internal.
Hughes
You would have applied if they had?
Lewis
Oh, I don't know if I would really have done it. But there were times when I regretted not being part of the actual formal organization of AIDS providers.
I remember hearing about the KS job that Helen had with Marc, and thinking, "Oh, that would be interesting." Shirley and I discussed it and she pointed out that you can't work twenty-four hours a day. I could take the job, but then I couldn't volunteer all night. Which I think was good advice.
At any rate, Cliff was chosen purposefully by the administration. I don't know how it evolved that he had the autonomy to organize the unit in the way he wanted it. I think the unit was under certain pressures from the community. For one thing, there had been a lot of discussion about should this be a separate unit. That was part of the meetings that Flo Stroud ran. Paul would usually come to those meetings and discuss where the unit should be going and what it should look like.
Burnout
HughesYou told me off tape that you were initially reluctant to do this oral history and that, in looking back, you realized that at the end of your career at UC you were suffering burnout.
Lewis
I was, and I am still recovering. I have found over the years that my affect became much flatter; I don't laugh as easily; I don't cry as easily. I feel like I've, in a sense, lost the ability to enjoy life in the way that I used to have. And part of that, of course, is I'm ten years older.
I think the experiences that I've lived through explain why that's happened. I've really pretty much totally backed out of HIV, and at this point have no direct connection with even the local AIDS organizations. I feel like I need to get more centered and learn better how to enjoy myself. I think that that's not uncommon among people who have worked in HIV for a long time. The same applies to people who work in ICUs [intensive care units] for extended periods, or in any kind of really intense interpersonal
Hughes
Well, it was a long epidemic for you.
Lewis
I've only been out of it for six months, not very long.
Hughes
Is there anything that could have helped you or anybody else?
Lewis
I don't know, and I've not pondered that question, because I've only come to accept in the very recent past--weeks, days maybe--the fact that I have had burnout. And so I haven't thought that piece through. I have thought, What can I learn from this experience with HIV, and is there a presentation I should develop and take out to conferences? [laughter] But I don't think I have any of the answers. Right now, I am just giving myself time to heal.
Hughes
That's wonderful.
Personal Contribution to the Epidemic
HughesIn closing, what do you consider to be your biggest contribution to the HIV effort?
Lewis
I think it had to do with connecting people with each other, as in organizing an educational program, trying to involve the experts, whether it was the book or a formal program or whatever. So a lot of people got to connect and meet each other and learn from each other that would not have had I not done that. The epidemic was an incredible growth opportunity in lots of ways for many of us. There are any number of folks who have traveled the world in ways that they would never in their lives have experienced had there not been the epidemic.
I went to Istanbul, sent over by the World Health Organization to represent American nurses at a meeting on professional education [1990]. Helen actually helped to orchestrate that. I edited a book that was well accepted and read throughout the country. I gave speeches all over the country. So in many, many ways, the epidemic enriched my life. It also impoverished me in certain ways. I think I gave back a good bit, compared to what I got.
Hughes
Thank you very much.
Transcribed by Shannon Page
Final Typed by Julia Rechter
Courtesy of Regional Oral History Office, University of California, Berkeley
http://content.cdlib.org/view?docId=kt700007g5&brand=oac4
Title: The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981-1984, Vol. II
By: Sally Smith Hughes
Date: 1995 and 1996
Contributing Institution: Regional Oral History Office, University of California, Berkeley
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