The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Vol. I

Early Experiences with the New Disease

Gay-Related Diseases

Hughes

In the course of those years, did you notice conditions that now you realize indicated that something was beginning to happen in the gay community?

Campbell

That gets me to the subject of gay-related diseases. I remember when I rotated through infectious disease at San Francisco General--this was about 1965 or '66--Haight-Ashbury was just flowering, and lots of people came in with hepatitis. They always said, "Well, we shared needles," and there they were with hepatitis. We didn't know hepatitis A, B, or any of that.

Hughes

It was all just hepatitis.

Campbell

It was just hepatitis.

I remember one young man who came in with hepatitis who didn't share needles. I just knew instinctively that this was a young gay man. But of course, we didn't talk very specifically about it, but it just seemed like we started talking the same language. And he knew that I knew how he got it, but it wasn't discussed at all. Of course, when I went into private practice, I saw lots of hepatitis, parasitic diseases, enteric bacterial diarrhea, and many, many of the STDs [sexually transmitted diseases].

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Articles on Sexually Transmitted Disease by Bay Area Physicians for Human Rights [BAPHR]

Campbell

In 1979, BAPHR did a little series in the Sentinel, which was a local gay newspaper, on the approach to diseases which are common in the gay community. We did a hepatitis series, an enteric pathogen series, gonorrhea, syphilis, and others. Of course, we didn't do anything about immunodeficiency, because in 1979 it was not suspected that this was a problem.

Most of the articles were geared to reassure people about these diseases. In other words, either a disease has a treatment, or, you'll get over it; so don't worry. I think there was even an article that a proctologist wrote on fisting and the hazards associated with this particular sexual practice. It was not in any way putting it down, but just saying, it must be done with safety to avoid trauma to the individual. The bottom line of the articles echoed the theme of the seventies: sexual liberation.

Sexual and Gay Liberation

Campbell

Many of these articles were done to inform and reassure the gay community, and to orient them as to what there was to be expected and not to get too worried about it. I don't remember any of these articles ever saying things about wearing condoms, or abstaining from certain sexual practices. This was the peak and the tail end of the seventies when sexual liberation was extremely important.

Hughes

Was it a conscious aim on your part not to say, "Stop and desist"?

Campbell

It just didn't even seem to be an issue at that point. It seemed like the whole community was so oriented toward pleasure from sex, and getting to know oneself sexually, that saying, "This stuff has got to stop," would be really out of step with the culture.

I don't remember any gay people putting out such messages at that point. Even the straight community would be in the direction of sexual liberation at that time. The people who would like to close the bathhouses or opted for safer sex were not being heard.

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Hughes

Do you think there were those voices?

Campbell

I'm sure there were a lot of those voices, but they may have felt themselves politically incorrect.

Hughes

Now, you're talking pre-AIDS, right?

Campbell

Yes. I'm talking 1979, and even 1980; there would have been absolutely no awareness.

The Centers for Disease Control

Hughes

Well, I have a quote from the March, 1980 The BAPHRON

[BAPHR's monthly newsletter] by an "executive consultant", whatever that means, to BAPHR by the name of Jeff Richards. Does that name mean anything to you?

Campbell

No.

Hughes

There was no other identifier. Anyway, he said, "It is recognized that sexually transmitted diseases in the gay population is [sic] a real and growing problem for a variety of complex reasons." Then later in that same column he said, "The CDC shares this concern with most gay health professionals," as though the problem in San Francisco was not an isolated event.

Campbell

Hmm.

Hughes

William Darrow, who was a sociologist with the CDC wrote an article before recognition of the AIDS epidemic on the rising incidence of sexually transmitted diseases in the gay population.

Those are two pieces of evidence that the CDC in 1980 recognized that STD's were on the rise in the gay population.

Campbell

Yes, and certainly in my articles and my editorials, I stressed the fact that sexually transmitted diseases were a problem, but I don't think BAPHR at that point was handing out specific guidelines.

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Hughes

No, I didn't see any signs of that in going through the pre-AIDS The BAPHRONs.

One backdrop for recognizing the epidemic is precisely what you were talking about: the movement towards gay liberation which had started in the sixties but, you tell me, was really reaching a peak in San Francisco about the time that the epidemic was recognized.

Campbell

Oh, yes, definitely.

Hughes

How do you see that playing into the response?

Campbell

I feel the response to the epidemic was gradual. From 1981 to 1985 in San Francisco, each month, more and more people were feeling the impact of it. Of course, if you were in medicine, you felt the impact very early, because you saw the disease and the devastation of the disease. If you didn't live in San Francisco, you might see it much, much later, because you might not know anybody who had AIDS or have any conception of what AIDS was all about.

But when the first articles came out in 1981 about Kaposi's sarcoma and Pneumocystis, I don't think that I immediately felt panicky.

Hughes

Were those articles your first awareness of what later became the AIDS epidemic?

Campbell

Yes, 1981.

Hughes

So you were informed through the written word?

Campbell

Yes.

Retrospective Recognition of AIDS Cases

Campbell

I had seen, between 1979 and 1981, retrospectively, people who came in the office with fevers that lasted for a few days, maybe a rash, and maybe some lymph nodes. It wasn't that I was

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immediately saying, "This represents something terrible." I would just make notes, and most of these people in follow-up a week later felt fine. I would say, "Well, you had a viral illness."

However, in 1982, I became very aware that many patients didn't seem right, not just those with Pneumocystis or Kaposi's sarcoma.

Hughes

In what way not right?

Campbell

If they had Pneumocystis, it was kind of easy, because there was a certain treatment for that. You just said, "You have that syndrome," GRID [Gay Related Immune Deficiency] or whatever, "and this is Pneumocystis, and this is how it's treated."

Hughes

PCP is mainly what you were seeing?

Campbell

A few cases, but more often I would see people who had unexplained fevers, weight loss, diarrhea, or lymphadenopathy that didn't have a particular cause. It was very, very mysterious. Many people came in because they were extremely worried about this new syndrome. They seemed otherwise healthy.

Hughes: Did you associate those people with weight loss, et cetera, with this new syndrome?

Campbell

In the summer of 1982, the acronym "AIDS" was coined, and I think later that summer I became very, very involved, and started going to all of the meetings of the BAPHR Kaposi's Sarcoma Ad-Hoc Committee. The committee met every two weeks and we discussed diseases which seemed to be linked to the new syndrome. Later that year, or early 1983, we put out the guidelines.

I remember grand rounds, I think July or August, 1982, at UCSF, was the discussion of GRID. I don't think it had yet been named AIDS. The next month it was named AIDS. Dr. Larry Drew talked about how he thought it was transmitted, i.e., the sexual activities that were at risk for transmission, based on his previous work with CMV [cytomegalovirus]. Someone presented a study about T-cell subsets in the gay community and the fact that many seemingly healthy gay men had increases in the T-suppressor subset.

Hughes

Prior to that had you associated these various conditions with immunodeficiency?

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Campbell

Just vaguely. It wasn't much on my mind until early 1982. I knew it was something that we might see, but I just wasn't completely into it.

Hughes

Well, for good reason, right? From 1981 until the summer of 1982, how many cases which you now recognize to have been AIDS do you think you might have seen?

Campbell

In January of 1981, we had somebody who was extremely sick with an encephalopathy and died after four months. There was zero association; it was just a weird disease. I think in retrospect, this person had AIDS, but we don't have any way to prove it retrospectively.

Hughes

Was it a young person?

Campbell

It was a man of about fifty who had two weeks of fever, then encephalitis. He died four months later.

Hughes

Did that stand out in your mind at the time?

Campbell

I didn't link it to the AIDS epidemic until about two years later. That summer [1981], they first talked about KS [Kaposi's sarcoma]. But I didn't link the two. They were just isolated diseases. At the end of the year, I had a patient who came in with bilateral upper lobe infiltrates; he didn't have medical insurance, so I sent him over to San Francisco General. They called me to tell me it was Pneumocystis.

Hughes

Why did you send him to San Francisco General?

Campbell

He had no medical insurance, but needed to be hospitalized.

My partner, Dr. Wayne Bayless, was seeing somebody that we put in the hospital in May 1982. He had a mysterious breathing problem with a negative chest x-ray. Then he became really sick. He had Pneumocystis.

Hughes

Did you know how to diagnose Pneumocystis?

Campbell

It was somebody I had never seen, and it was my partner's day off. I looked at the chart when Pacific Medical Center emergency room called. It just seemed to me like one of those mysterious GRID cases with Pneumocystis. A bronchoscopy confirmed the diagnosis. In 1982 those people with Pneumocystis were extraordinarily sick. They presented with very advanced disease, as did this person who died. The other person whom I talked about died soon afterward with CMV.

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Later that summer I had another patient who was brewing a similar disease which was diagnosed as Pneumocystis in the hospital. He recovered from his Pneumocystis; a couple of months later he presented in my office with a lymph node which was actually a bag of cryptococcus.

Recognizing a Syndrome

Campbell

Starting with spring 1982, I was highly aware of the presence of the new syndrome. Everything that I saw seemed to become associated with it. I started attending all AIDS-related conferences in the summer of 1982.

Hughes

For some years, you had been dealing with young men who had infections.

Campbell

Yes.

Hughes

A lot of your patients had sexually transmitted diseases.

Campbell

Yes.

Hughes

But wasn't it startling when young people began to die? That must have been a new experience for you.

Campbell

Yes, it was very, very startling. When Larry Drew in July 1982 said, "These are samples of the T cells of certain gay men in San Francisco," I knew something was happening. Then two months later when I read all about this in the New England Journal, I knew there was something out there that was very pervasive, and it sounded like many people might have contracted whatever it was. Of course, I immediately had my own T cells checked, and they were very good. For some reason, I wasn't worried the first time I did that since I felt fine and was rarely ill. But a whole lot of other people felt very well, and they would have these very strange T-cell ratios.

Hughes

Larry Drew is a virologist, right?

Campbell

Yes.

Hughes

But he was doing immune studies as well?

Campbell

He might not have presented that aspect of that particular grand rounds. I know that he talked at that grand rounds, as

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Marcus Conant did, and somebody else. Maybe somebody else presented the T-cell findings of a survey.

Hughes

Art Ammann, who is a pediatric immunologist at UCSF, did some of those early studies.

Campbell

Maybe he did. He was at that conference.

Hughes

So you were slowly putting together pieces of the puzzle as we now know it to be composed. It must have been difficult to associate isolated cases with different aspects of what we now recognize to be a syndrome. But there was no real rationale for putting them together, was there?

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Campbell

I think many people were putting the pieces together, because they coined that term acquired immunodeficiency syndrome in August 1982.

The Terms GRID and AIDS

Hughes

Did you have any feeling about the term GRID [Gay-Related Immune Deficiency]?

Campbell

No. It seemed to describe the sporadic cases we were seeing in 1981 and 1982.

Hughes

Certain groups objected to the name of the disease being linked with the gay community.

Campbell

Yes. Of course, that term was only in use for about one year. They started talking about GRID in the summer of 1981 when those first cases of Pneumocystis were reported. In August 1982, "GRID" went out and "AIDS" came in.

Hughes

One of the rationales for choosing "AIDS" was not only is it descriptive of the syndrome, but it also could not be taken as discriminatory.

Campbell

And furthermore, they were reporting it in IV drug users, blood transfusion recipients, and hemophiliacs. This just filtered through in 1982--all of these risk groups who had GRID.

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Hughes

I'm gathering from your comment that you too thought of it initially as a gay disease, because all the people you were seeing with it were gay. Is that true?

Campbell

Yes.

Hughes

While the infectious diseases that you had previously seen in gay patients occurred at a high frequency, they were nonetheless diseases which could also appear in other populations. In other words, they weren't strictly gay diseases.

Campbell

Yes, and furthermore, they were treated and they went away, and people seemed to feel well again. These symptoms in AIDS were much more severe, longer lasting, and just didn't respond to treatment.

Hughes

Dr. [Richard] Andrews said that there was an assumption in the gay community that if you got a sexually transmitted disease, you went to the doctor and got an antibiotic and it would go away.

In other words, no big worry.

Campbell

That was a thrust of this 1979 series in the Sentinel about all of the diseases that you might encounter out there. It was almost like advertising for BAPHR: we're here to treat these diseases, and these diseases do have treatments. Most of them go away, but with some, like hepatitis, a few people do end up with chronic hepatitis. That may be the worst thing that could happen to someone.

Theories about Etiology

Hughes

Did you have any theories about what was causing the AIDS epidemic?

Campbell

Oh, yes. It seemed abundantly clear by the middle of 1982 that it was some sort of a virus, and that it was transmitted sexually. It would seem that rectal sex would be the highest risk, since transmission seemed to require bloodstream invasion. Some people thought that cytomegalovirus might have something to do with it. I thought maybe it was some strain of cytomegalovirus.

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Hughes

Cytomegalovirus had been seen in gay populations, and I'm sure other populations as well, so how would it explain this new epidemic? It was thought to be a mutant form?

Campbell

Yes, some form of cytomegalovirus that might have been a little more virulent. Larry Drew had shown that cytomegalovirus in itself will suppress the immune system, and maybe the new CMV--or strain--was one that really suppressed the immune system. But he had shown also that a lot of people eventually recover from the immunosuppression of CMV. So in the early years, there was some hope that people who were immune-suppressed with abnormal T cells may improve in a year or two. However, it seemed that every time I read reports or did serial T cells on such patients, they always got worse.

We had a huge discussion in our BAPHR scientific affairs committee about ordering T cells. There was a lot of resistance to doing that particular test on people who were just worried, because the fact of the matter is that it would just make them worry more.

Hughes

And you couldn't do anything about it.

Campbell

Right.

Hughes

Was the test expensive?

Campbell

It cost about what it does now; it wasn't that expensive. It gave you a huge amount of information, and it was really good for the clinician to have that information. But unless it turned out normal, it wasn't very good for the patient.

Hughes

How could you use that information?

Campbell

You could certainly identify patients who were likely to get opportunistic infections.

Hughes

And take prophylactic measures?

Campbell

Occasionally we would prophylax people for Pneumocystis, but most people we didn't prophylax for Pneumocystis. But if there was somebody who just was not feeling well, or had a little bit of pneumonia, or unexplained complaints, occasionally I would do the T cells and find that they were normal. It was just wonderful news: well, it doesn't seem to be this new disease.

However, most of the time, the T cells would be just what I expected: they would be really terrible, and you would have to wait and see what evolved. At that time there were no

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guidelines about Pneumocystis prophylaxis of patients with fewer than 200 CD4 cells. We looked more at ratios rather than absolute numbers; a high CD4 to CD8 ratio usually meant there was no problem with AIDS; a very low one usually meant infection with the "new virus." The ratio seemed to be more telling than the absolute numbers.

Information Channels

Hughes

How informed were your patients, and how early in the epidemic, and how did they become informed?

Campbell

The people that were coming to the office became informed very early, because they were concerned and they wanted as much information as possible.

Hughes

Where were they getting their information?

Campbell

They got their information from friends who were sick; they got information a little bit from the gay press, but not very much.

Hughes

Why was that? You might think that the gay press would be moved to get as much information as possible out to the community.

Campbell

They did talk about AIDS in the gay press, and sometimes they talked about it quite responsibly, and sometimes it was irresponsible.

Hughes

But there was nobody in San Francisco in the early days along the lines of Lawrence Mass who wrote article after article for the New York Native.

Campbell

Yes. I used to get the New York Native because there was a lot of information there. It had the statistics about how many people in each state had AIDS, how many reported cases. So I would get that every week too. But then there were some people that wrote for the New York Native who were very irresponsible.

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Hughes

Wasn't that something new for you as a medical person, to go to a nonmedical paper to get information on a disease?

Campbell

Oh, yes, and the San Francisco Examiner and the San Francisco Chronicle were always ahead of any journal article when it came to reporting something new.

Caring for the "Worried Well"

8. For better continuity, the order of discussion topics has been reorganized.

Hughes

Were you seeing a lot of "worried well" in your practice?

Campbell

Oh, huge numbers.

Hughes

Who just wanted you to give them your seal of approval that they didn't have this disease?

Campbell

Yes, and that was one of the very difficult things about practicing medicine then, seeing people with AIDS then as opposed to now. Now, it's so easy, because it seems like everybody is identified as either HIV-positive or HIV-negative. It's very rare that I run into anybody that's untested, and most of the people that I run into now who are untested probably are negative. I have one or two people in the practice that I see year after year for a physical exam. There may be something about them that makes me think that they have it, and they don't want to take the test. But those people are in the minority.

1983 and 1984 were probably the highest anxiety years, because nobody was tested. Many people were very worried. Many felt vaguely ill. The whole thrust of seeing people was to reassure them, and there was sort of a false thing about it. I would reassure them, but deep down, I was very, very worried, and they continued to worry. People often went from doctor to doctor because they really did not feel reassured, because there was something about the way they felt that wasn't right.

Hughes

Do you think they were also picking up on your lack of certainty?

Campbell

Oh, yes. It was very difficult. Some people wanted a whole lot of testing, wanted a lot of information, wanted to have

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their T cells done and all of this, and other people did not want that stuff done. "Please just tell me I'm okay. But don't do all of these scary tests." There were others that would take the bull by the horns and say, "Well, do the T cells." And if I did the T cells and they were abnormal, it was sometimes difficult to know what to do next.

Hughes

What did you do about the group that wanted to be assured but didn't want you to do any tests?

Campbell

Well, some of them would come back, and a lot of them would go off to other doctors. It's a very, very difficult group to handle. When the antibody test came out in 1985, there were some gay groups, including BAPHR, that discouraged people from taking that test. That was the scariest test of all. That was scarier than T cells.

Hughes

Yes, that was very difficult to deny, wasn't it, if it came out positive?

Campbell

Yes.

AIDS-Related Activities at BAPHR

Campbell

I started the journal club in BAPHR, and we went through journal articles that would give state-of-the-art reports about AIDS, mostly anecdotal--anything from T cells in gay men, to treatment of Pneumocystis, or new syndromes such as thrombocytopenia. It was just little bits of the puzzle. I started subscribing to many journals just to be sure that I didn't miss any articles. We met monthly.

Hughes

You also wrote short journal article reviews in The BAPHRON as well.

Campbell

I went to all of the conferences in the city of San Francisco, and there were probably three or four every year that pertained to the subject; the speakers always brought much new information.

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Hughes

What were you hoping to gain when you went to these symposia?

Campbell

Just more information.

Hughes

On how to treat your patients? You had a practical orientation?

Campbell

How to treat, how to diagnose, or how to recognize--just to get oriented. It was a disease that there was no straightforward information on. I had to get the information from symposiums or looking through the mainstream journals. Or looking at the Chronicle or the Examiner; information appeared there before it would appear in the New England Journal. Talking to members of BAPHR who were apt to be seeing a lot of patients with AIDS was also helpful.

Hughes

Was there coverage in the lay press because San Francisco was a major center of the early epidemic, or was there more to it than that?

Campbell

It seemed like the journalists certainly did have a responsibility to cover it.

Etiology

Campbell

Everything that I knew about viral transmission seemed to confirm my suspicions about the viral etiology of the disease.

Hughes

Did you ever consider some of the alternatives? For example, poppers, immune overload--there were all kinds of early theories about etiology.

Campbell

The poppers I thought was a little bit unlikely. I would have liked to have thought that immune overload was the cause, because it seemed like if you gave the immune system a rest, the disease would go away.

Hughes

Did you ever counsel your patients along that line?

Campbell

Yes, it did seem that if you did have something that looked like immune deficiency and you were subjecting yourself to more new pathogens, you wouldn't get any better.

Hughes

Do you think because you'd had experience with hepatitis in your practice that you were predisposed to favor a viral,

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sexually transmitted, blood-borne disease when this new disease appeared?

Campbell

Yes. I don't know as it was my original thought. Dr. Larry Drew made some of these suggestions; hepatitis, CMV, this new thing: blood-borne. Tissue trauma. Direct bloodstream inoculation. Bloodstream inoculation via the rectal mucosa made sense, because the disease did not seem to be going into the straight community.

Duration of the Epidemic

Hughes

Did you have any feeling about how long this epidemic was going to last?

Campbell

I thought it would last a long time.

Hughes

Why did you think that?

Campbell

Because the T-cell studies that were being done showed such a pervasive abnormality in large segments of the gay community. I saw that in the foreseeable future, we were going to see many people become ill. I didn't think how many years, but I just thought that it was going to be around for a long time.

Hughes

So this wasn't something like Legionnaire's disease, that science was going to dash in and solve?

Campbell

No, and I also felt that it probably had been around for quite a while.

About this text
Courtesy of Regional Oral History Office, University of California, Berkeley
http://content.cdlib.org/view?docId=kt6580067h&brand=oac4
Title: The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Vol. I
By:  Sally Smith Hughes
Date: 1996
Contributing Institution: Regional Oral History Office, University of California, Berkeley
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