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

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II The AIDS Epidemic

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.

Attempts to Reduce the Risk of AIDS Transmission

Patient Counseling

Hughes

Did you counsel patients along the lines--I mean early--"Maybe you'd better cut down on your sexual activity"?

Campbell

I think starting in 1981 or 1982, definitely. When they showed the charts about the T cells in the gay community, it didn't seem like it was just a few isolated cases of KS. It seemed

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like there must be something that many, many people in the gay community, maybe more than half, were suffering from. Since it was most likely contagious, sexual contact had to be modified, regardless of who the partner was, since one really did not know who out there might have it.

Hughes

So you talked along those lines with patients?

Campbell

Oh, yes, I started talking about sexual risk-reduction guidelines in 1982.

Hughes

How was such advice received?

Campbell

Variably. Some people thought it was very good advice, and there were a few that would say, "Well, we don't really know that that's the case, and so I am going to do what I want to do." Some people rejected it. And some people felt very angry that they were given such advice. But I don't think most people.

When we started formulating risk-reduction guidelines, about certain things like monogamy and safe sex, it seemed to me that the only answer at that point was safe sex with everybody. There were a number of people that said, "Well, monogamy is okay," implying that monogamy would protect you from whatever this was. However, I thought many seemingly healthy persons carried the virus. The problem was that if you were out there trying to meet somebody to become monogamous with, you had a 50 percent chance of meeting the wrong person. If you were a gay man in San Francisco, and even if you met somebody two years ago and you were monogamous all of that time, you still might not be safe.

The Position of the Centers for Disease Control

Hughes

But was that way of thinking common in the population at large? Maybe it wasn't used to the concept of a latent infection. You had sex with somebody who for all intents and purposes looked perfectly healthy. Wasn't it unusual to expect people to question a partner who looked as fit as could be about whether they were a danger?

Campbell

Yes. Dr. Curran talked to BAPHR in 1983 at our conference, and he presented his detective work on AIDS in the USA. We had just put out our first set of safe-sex guidelines, and I was so anxious that this topic be discussed at a conference like that,

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that I raised my hand and I said, "Have you come up with any particular sex practice which is likely to transmit this virus?" And he said, "No. There isn't anything in our studies that seems to have been more associated than other things." CDC had done a study, but somehow, it didn't seem to factor out that one thing [sex practice] was any worse than another thing.

However, he said, "I think if you're monogamous that this disease might not be such a worry." I had a couple of friends that were in BAPHR that had been monogamous since 1981; they met in 1981. They were doing everything together, but they were monogamous. They didn't have nearly the anxiety that I had. A lot of people like that felt relatively safe. And those people both have AIDS. Because early in 1981, I think, one of them had contracted it. But this was very typical.

Hughes

So you objected to Curran saying that if you were monogamous, you were safe? That wasn't necessarily the case.

Campbell

Yes. Monogamy would be nice, but I think it would be very difficult for many people in the gay community to suddenly become monogamous, and [it was] not a realistic expectation. The realistic thing was safe sex with everybody. Even if you were in a monogamous relationship, safe sex should be the rule. Several years later, when many started getting tested, if you looked at gay couples in San Francisco, maybe a third were testing positive-positive, and another third were testing negative-negative, and a third were testing negative-positive. Those latter third were really the ones who had to be on the guidelines.

Hughes

So Curran at that stage as spokesperson for the CDC wasn't advocating safe-sex procedures for every encounter?

Campbell

Well, he never came out and said, "If you are in a monogamous relationship, you should be on safe-sex guidelines." Many people who were in monogamous situations then--regardless of how long they'd been monogamous--seemed not to be worried. And people who were really worried were people who were having multiple partners.

Hughes

A study published by the CDC in 1983 found the factor putting people most at risk for AIDS was number of partners.

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Campbell

That is correct. What that study showed was the number of partners [as the main risk factor]. I think this led to saying, "Monogamy is like one partner, and celibacy is zero, and this is the best way to avoid getting AIDS."

Hughes

Also, because some of the early publications had associated promiscuity and AIDS, it predisposed certain people to say, "Well, I'm not promiscuous; I only have a few partners; I don't have a problem." You didn't even have to try to be monogamous.

Campbell

Yes, and I know that our [BAPHR's] first set of risk-reduction guidelines advised general things like, "Get to know your partner first." It sounded very good, but it didn't make a lot of sense to me, considering that what you really want to know is what nobody could know, unless you had eyes that had DNA probes in them. [laughter]

Hughes

You couldn't know at that point, because there was no antibody test.

The Bathhouses

Campbell

My feeling about this, which gets to the bathhouses, is that so many people then were of the thinking that if you met somebody decent, who was seemingly healthy and agreed to a mutually monogamous relationship, there was no risk of AIDS virus transmission.

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Hughes

Was there an unstated assumption, then, that there were good gay men and there were bad gay men? That some, just the way they presented themselves, as you were saying, must be okay?

Campbell

Yes.

Hughes

Maybe those bathhouse people were the bad guys? Did it ever get to that?

Campbell

My feeling was that if you went to the bathhouses, you just assumed that you were in a place where many people were infected. Therefore, any contact needed to be very, very safe. You would instinctively put up your armor, because you were in a real high-risk population.

Hughes

You mean you make it safe by taking safe-sex precautions?

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Campbell

Yes, if you were in a bathhouse, it would seem reasonable to take the maximum precautions.

Hughes

But did that happen?

Campbell

I don't know if that was happening, but to me, it seemed like the reasonable thing. I thought, rather than having the bathhouses closed down, safe-sex instruction should start there, with monitors and behavior codes. The bathhouse could still be an erotic place to meet people, but with the understanding that high-risk activities were definitely verboten. Some people who met their partners in more proper places would often think that they were really meeting a much safer person and might feel more comfortable doing more.

Hughes

Do more that was potentially dangerous.

Campbell

Do more dangerous things; it's sort of a paradox.

Hughes

Yes, I can see that.

Campbell

People said, "Well, if we close down the bathhouses, the epidemic will go away," or, "We won't have as much transmission." To me, it seemed a bathhouse really could be an arena where you post lots of signs on walls. Bathhouses have to be set up in a way that people realize that there's a code of behavior, that there's only so much you do. It could be compared to rules of safety and etiquette which are found in sports.

Hughes

Which would be enforced by social pressure, not by outside force?

Campbell

Yes. And I know that some time around then, they did start having these, quote, "safe-sex clubs," in which people were touching, hands-only contact. There was a lot of peer pressure: you do only this and that's it. And people felt very safe, but yet it was erotic and many people enjoyed it.

Hughes

And that happened in the bathhouses?

Campbell

Those were other organizations that started to crop up.

Hughes

A problem with this argument would seem to me to be that some people were in denial. Regardless of guidelines, they continued their lifestyle. And because the bathhouses were built on the idea of anonymous sex, wouldn't they attract people willing to take sexual risks?

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Campbell

Some people, yes. I don't know if you read about Patient Zero in Randy Shilts's And the Band Played On?

Hughes

Yes. Gaetan Dugas wasn't Patient Zero, as we know.

Campbell

He went into the bathhouses and infected all these people. My feeling is that if you go to a bathhouse, you had better suspect that there are sick people there. You put so much blame on this particular person, who was already ill, but then there were so many people who were very well and really enjoying their sex lives who could potentially be carrying the virus. The message that I thought had to go out in 1982 is that everybody, including you yourself, may be carrying this virus. And it's your responsibility, no matter where you are, in the baths or at home, to operate on that assumption. You don't operate on the assumption that you don't have the virus and other people do.

BAPHR's Safe-Sex Guidelines

Hughes

You were on BAPHR's scientific affairs committee from the start?

Campbell

Pretty much from the start, yes.

Hughes

Is that where these safe-sex guidelines were being discussed?

Campbell

Yes.

Hughes

Can you remember when you might have begun to talk about them?

Campbell

Yes. We started talking about them in late 1982. We put out a draft of guidelines for blood donation in January 1983.

Then for the health fair that came up in April 1983, we had our first set of guidelines. Bob Bolan and I did those together with the scientific affairs committee.

Hughes

Can you recreate some of the discussion that went into those guidelines?

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Campbell

We didn't talk so much about bathhouses and whether they should be opened or not. I wanted to make sure that we had it in black and white that the most dangerous thing that one could do was rectal intercourse without a condom.

Hughes

Now, how did you know that?

Campbell

Because of things that Dr. Larry Drew had been talking about the previous summer. I had just gone to a symposium in March 1983 at NYU at which Michael Marmor gave some pretty good data on it. We published those guidelines just a few days after, April 1983. I wanted to make absolutely sure that that warning was in them.

Some of the things that we said were general, like "reduce the number of your sex partners"--things that seemed to make sense, but they were subject to a broad interpretation. [laughter] There was certainly not a message to stop having sex.

Hughes

But did some people interpret it that way? Did you get attacked?

Campbell

No.

Hughes

The guidelines were accepted pretty well?

Campbell

Yes, and obviously, people did start reducing the numbers of sexual partners, and I think the majority of people can do that only very, very gradually. But there are a few that cut it off completely and haven't had sex since. I've talked to many patients like that.

Hughes

There was a statement: "As health care professionals we recognize the importance of physical and emotional intimacy for overall health."

You said something along those lines in the very first guidelines?

Campbell

Yes: don't give up sex. Then there was a message to reduce the number of your sexual partners, get to know your sexual partner first, lean toward having one sex partner.

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Hughes

Even though you didn't think that that was adequate, right?

Campbell

No, I definitely didn't think that that was adequate. I thought that it should be stated clearly that certain types of sex were dangerous no matter who it was with.

Hughes

So why didn't the guidelines say that?

Campbell

I think I did get that into the first guidelines. That would be a very interesting document to read. I guess I just eventually threw it away, because it didn't seem to have much meaning.

Later Iterations of BAPHR Guidelines

Hughes

By 1984, the guidelines appeared in several guises. For example, there was a wallet-sized one that was passed out at Gay Pride Day.

Campbell

Yes, that's right.

Hughes

And then there was a version that was in street language.

Campbell

That's right.

Hughes

There was another version that was academically oriented. I suppose that's different than the medical evaluation?

Campbell

Well, we did three [editions of guides for use by physicians for] medical evaluations of persons at risk for AIDS. I think I probably sent you the most recent one, which was 1989 or '88, but I think we did one in 1984 and maybe 1986.

They always had the safe-sex guidelines in them. We did them in conjunction with the Department of Public Health and the San Francisco AIDS Foundation to get their seal of approval. But the first ones we did in early 1983 were just our BAPHR committee, and we just got them out for the health fair, and that's all.

Hughes

That was why you were hurrying it?

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Campbell

Yes. We worked on that for about a month or two.

Hughes

It seems to me there would be three categories of people in your potential audience: the people who knew that they had this disease, the people who didn't know but maybe later learned they were infected, and then the people that were just worried about it. Right?

Campbell

Yes.

Hughes

Was it in your consciousness that the guidelines had to be broad enough to draw in all these people?

Campbell

In those days, it was just a small number of people that knew that they had it, because they'd had Pneumocystis or KS. And then there was a huge number of people out there that were worried, worried and a little bit sick, and worried and mostly well. And then there were a number of people who were well and not worried.

Assessing Risk

Hughes

You had to decide what sexual practices were safe, what wasn't safe, and what were possibly safe. BAPHR tried to categorize what was high risk, what was low risk, and what seemed to be safe. How did you reach those decisions?

Campbell

That category that said "possibly safe": those were my words. I think a lot of people on the committee, and of course, most of the gay community, wanted something that said "safe" and "unsafe."

Hughes

No gray area.

Campbell

I just thought we had to have that gray area. Otherwise, it would be misleading. It's just how much risk does one want to take?

Hughes

Where did you get information to categorize risk?

Campbell

A lot of it was based on knowledge of anatomy, of certain tissues, and concentration of viruses in certain tissues, and common sense. We put mouth-to-mouth kissing in "possibly safe." One could assume that if the virus was in very high concentrations in saliva that the virus would be in the community at large. So it didn't seem very likely that kissing

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was a common way of transmission. Most of this [categorization] was by inference.

Hughes

It's inference based on the little medical and scientific information that was available and on your knowledge of the gay community. Did you become authorities, in a way? Were there people at the CDC, for example, who would be able to combine these different sources of knowledge and come up with some reasonable safe-sex guidelines?

Campbell

When we were doing that, the CDC was not saying anything, except something to do with risk for AIDS associated with numbers of partners. Therefore anything that they said just did not seem to be particularly relevant. There were a few people who were talking about transmission of other diseases. Larry Drew was talking about the transmission of CMV, and how that correlated with receptive anal intercourse and seropositivity for CMV. Michael Marmor was talking about instances of KS correlated with sexual practices, and was able to get statistically meaningful data.

Then you look at the anatomy of various bodily organs, like the rectum, the vagina, the penis, the mouth, the skin, the hands, as to how many cell layers does something [a pathogen] have to go through until it gets to the blood. Much of that was based on histology, and tissues with only one cell layer such as the rectum would facilitate transmission more readily than tissue like skin which has many cell layers.

Hughes

This was the kind of conversation that was going on in BAPHR?

Campbell

This was the postulate, yes. We felt that we had to give some guidelines, and it seemed, and I guess still does seem at this point, irresponsible to say, "Well, this is safe and this is unsafe." You have to have a middle ground. You have to have a very high-risk category to make sure that everybody avoids the high risk, and that nobody is afraid to go for the safe. The middle ground is where you tread with caution as to how much risk you take. Some people are willing to take a lot more risk than others. Some people will do only things that are totally safe. But the object was to keep as many people as possible out of the high-risk category.

Hughes

Did you find that your medical colleagues that were not gay, and perhaps representatives of the CDC, whom I understand came to San Francisco with some frequency, were consulting you because you had knowledge that they didn't have?

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Campbell

Yes, there were some symposiums. I remember one that I think Marcus Conant gave in 1983 or 1984, to which a lot of authorities, like Roger Detels, came. Roger Detels runs the Los Angeles Men's Study of Multicenter AIDS Cohort Study and is a good epidemiologist. He had written on various sexual practices and risk of T-cell abnormalities. Representatives from the CDC were also in attendance. Some BAPHR physicians attended. We had a dialogue about what we thought was safe, possibly safe, and unsafe. We tried to stratify everything. This happened as a prelude to the re-publication of the guidelines that came out in the spring of 1984.

Guidelines for Blood Donation

Hughes

What were the guidelines for donating blood to the Irwin Memorial Blood Bank?

Campbell

There was a statement from BAPHR that came out very early in 1983 that went to Irwin Memorial. It said that gay people should refrain from donating blood.

Hughes

Was there controversy over that?

Campbell

Yes. I think almost everybody in BAPHR thought that that was a reasonable thing to do, but I think a few people thought it was not right to target the gay community and say that they were tainted or anything like this.

Hughes

Were you thinking about hepatitis when you were formulating these guidelines? Did that model play any role?

Campbell

I think I remember Paul Volberding or Don Abrams say, "The new virus seems to follow the hepatitis B model for transmission." Which means, it seems to be something that gets introduced straight into the bloodstream. That was why it seemed reasonable to use hepatitis B core antibody as a surrogate marker for AIDS exposure; the risk groups were similar.

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Campbell

The thinking was, if you somehow subjected yourself to hepatitis B, you might have also subjected yourself to HIV.

Hughes

Was this a way of getting around asking potential donors if they were gay?

Campbell

Starting January 1983, blood banks requested that anyone having had homosexual contact with a man since 1977 not donate blood. The same applied to intravenous drug users. Once you donated blood, it was then checked for the surrogate marker, hepatitis B core antibody.

Hughes

Surrogate markers threw the net wider than just the gay community, didn't they?

Campbell

Oh, yes.

Hughes

So that was the point of having the screen for gay donors, plus the surrogate markers?

Campbell

The surrogate markers would include a large number of people that may not have admitted to being in a risk group, such as gay or IV drug user, plus a few people that weren't in those risk groups who had really had hepatitis B, and they might have gotten it without being in those risk groups. That blood was not used either. If you've ever had hepatitis, you're not supposed to donate blood. I don't know if they're still checking for hepatitis B core antibody or not. I'm sure they check for hepatitis C antibody, which they couldn't [test for] until 1989. They must certainly be checking for hepatitis B surface antigen.

Guideline Distribution

Campbell

The first set of guidelines was done for the health fair that took place in the Castro District, Health Center Number 1, April 1983. Every spring, there was a health fair--there were health fairs at several health centers in San Francisco. That particular one, Health Center Number 1, had many gay people at it, because it was in the Castro District. But it also had some straight people and some elderly people who attended. The guidelines went out at that particular event, and were probably passed out at the Gay Pride Day parade that occurred in June. They might have even been in bathhouses. I don't know just how wide the distribution of that one was.

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Hughes

What about distribution outside the city, outside the state?

Campbell

I don't know if the first set of guidelines was widely distributed outside of the city. I do know that the next one (1984) must have been, because I saw them at the New Zealand booth at the international AIDS meeting. I'd say, "Oh, these are the ones that we wrote." [laughs]

Hughes

They were almost verbatim?

Campbell

Yes, or BAPHR had been acknowledged.

Hughes

What other guidelines were out there when yours came out in 1983?

Campbell

The Gay Men's Health Crisis in New York had guidelines.

Hughes

How did they compare?

Campbell

I think that they were even stricter.

Hughes

Did theirs come out before yours?

Campbell

Probably about the same time.

National Lesbian and Gay Health Conference, Denver, 1983

Hughes

BAPHR's position that, "secretions and excretions are the most likely vehicles for AIDS virus transmission,"

apparently met with an adverse reaction at the National Lesbian and Gay Health Conference in Denver in 1983. Do you remember that?

Campbell

There was an earlier meeting where they coined the phrase "AIDS," and I think that was in '82. I didn't attend that meeting.

Hughes

The one in 1982 was in Houston. The 1983 meeting was held in Denver.

Campbell

There was an AAPHR, American Association of Physicians for Human Rights. I know there was a meeting that February 1983 in Hawaii. I didn't go to that one either. I wasn't even in AAPHR. But it seemed like starting in late '82, most people in

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BAPHR thought that the body fluids were what transmitted "AIDS virus." It was really a minority in 1983 that thought it could be poppers, steam from the bathhouses, or "immune overload."

I talked to groups as late as early '84 that thought it was something else: the CIA is doing it; something was planted somewhere. But it didn't have to do with sex.

Hughes

I believe it was the 1983 Denver conference where the People with AIDS movement got off the ground. So some of the people there had an activist orientation.

Campbell

We had said early on in the guidelines that it's the body fluids that transmit it. I know that that was a big thing on that first set of guidelines: "This [disease] is transmitted by body fluids."

Hughes

Did you say what those body fluids were?

Campbell

That was one of the problems. I thought that "body fluids" was a really vague term about which most people don't have a good concept. I mean, it could be saliva or sweat.

Hughes

Yes. And is semen a body fluid?

Campbell

I think the term body fluid just seemed to be an eponym for semen. I wasn't pleased with those guidelines, because I thought there was so much vagueness. You really should talk to Bob Bolan,

because he was the chair of the committee that formulated the guidelines. I just kept needling him, because I wanted them to be more specific. I was not totally happy with those guidelines, because they were just too vague. They gave mixed messages about meeting people, numbers of partners, and other warnings that people could interpret too broadly.

Hughes

Was leaving the guidelines open to individual interpretation somehow tied in with the idea of not saying "NO" to sexual expression?

Encouraging Sexual Expression

Campbell

That was part of it. We were saying, "Yes, you can still have sex, but try for monogamy." [laughter] If that doesn't work,

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practice safe sex, and be careful of body fluids. I think people were afraid to go out on a limb to say, "Well, semen has it in it, but saliva doesn't," or, "sweat doesn't." Some people were very, very worried about saying specific things about things that were still theoretical. We were so vague about our theories that we just couldn't say these things with conviction, other than it just did seem reasonable that the virus was in some body fluids, as opposed to, let's say, the atmosphere or skin. You could touch people and breathe with them, but beware of body fluids.

Hughes

In a report in The BAPHRON in August, 1983, you wrote, "Heretofore we have never had any written rules as to what constitutes a "moral" or "safe" sex life, as is prescribed in heterosexual marriage." Then you go on: "We must bear in mind that sexual habits do not change overnight. Furthermore, new data on transmission of AIDS may be forthcoming. Consequently it may be several years before the gay community can establish its "sex code" which is both emotionally fulfilling and medically safe."

Campbell

That sounds like something I could have written. It doesn't sound very specific.

Hughes

My interpretation of what you're saying, and please comment, is: we're doing the best we can to give you some guidelines, but we frankly don't have all the information that we need to make these guidelines very explicit. Therefore, the ultimate sex code for the gay community is off in the future.

Campbell

Yes.

Hughes

But for your own safety, you've got to take these interim steps. Is that more or less what you were saying?

Campbell

Yes. And I suspect that, if that was August 1983, it was probably the report on the symposium that we had at the end of June.

Hughes

Yes. [pause as Campbell reads the report]

Campbell

[laughs] Well, there was a heavy component of psychiatry in the meeting that we had in June, 1983. "Morality" and "safety" were discussed at great length. That's probably why I used the words in quotes in my report. That may have been the home-

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going message from that symposium. Some of that report could have been paraphrased from some of the speakers there. It was run by psychiatrists, asking what can the gay community do about sexual fulfillment?

The 1983 and Later Guidelines

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Hughes

I have a few more questions on safe-sex guidelines. The BAPHR guidelines first came out in 1983.

Campbell

Yes, our first guidelines were published in the spring of 1983.

Hughes

And then there were several revisions. The revisions that I know about were in 1984, 1985, 1987, 1989, and there have probably been some more recent ones.

Campbell

The revision that we made in 1984 put sexual activities in the safe, possibly safe, and unsafe territories. And I think that since that time, there doesn't seem to have been an essential revision of the guidelines, other than the fact that many of the things that were in the "possibly safe" category, people now may call low risk, but not zero risk. It's more a change in wording and certain precautions.

1985 was the first time we came out with a booklet in which we elaborated on each sexual practice, and precautions to be taken when engaging in any of those practices, and why some of the ones that were possibly safe might not be safe under certain circumstances.

Hughes

I am interested in knowing what the general types of changes were.

Campbell

I think we remained firm on what was definitely safe, and firm on what was definitely unsafe, and we just elaborated on that

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big middle ground and changed the words a bit. I think that these days most people would still put them in a middle ground.

BAPHR Guidelines as a Model

Hughes

We talked last time about another set of guidelines, which were those of the Gay Men's Health Crisis, which you thought might be a bit more stringent. In the early days of the epidemic, were those the only two sets of guidelines? And did they become models?

Campbell

As far as I know they were, and I have a feeling that they did become a model, because when I went to the AIDS conferences around 1988 or 1989, I was noticing the guidelines for people from New Zealand, and they were just the same as we had written in San Francisco five years before.

Hughes

What about the guidelines that were eventually put out by the federal government? Did those follow the BAPHR model?

Campbell

They weren't in that "safe, possibly safe, unsafe" category, but I think that they said in essence the same thing that we had been saying: unprotected rectal and vaginal intercourse are unsafe, and there is reduction of risk if a condom is used. I'm not sure what it said about oral sex, because those guidelines change from time to time.

Hughes

There is the recent research on monkeys, indicating that oral sex is not as safe as it was originally thought to be.

Campbell

Yes, rectal sex seems to be safer than oral sex for monkeys, from what I heard. However, SIV is a different virus and it's a different species, and epidemiologically that doesn't seem to make sense with the AIDS epidemic.

BAPHR Collaboration with Other City Organizations

Hughes

The AIDS Foundation merely distributed the BAPHR guidelines, or was it more than that?

Campbell

In 1983 at the health fair, when we published our first set of guidelines, they were the BAPHR guidelines. In 1984, I think in preparation probably for Gay Freedom Day, which would have

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been around May, we had a series of meetings with BAPHR, the Department of Public Health, and the San Francisco AIDS Foundation, in which we rehashed the guidelines and decided on the risk categories. The guidelines that we presented in June 1984 had the seal of approval from the San Francisco AIDS Foundation and the San Francisco Department of Public Health. They were really a tripartite type of guidelines, because nothing got in there that didn't pass muster with those two organizations, and we had several meetings to get all three together.

At that time, I believe, we issued little cards that said, "safe, possibly safe, unsafe," and we published some annotated guidelines that stated why certain sexual practices were safe or unsafe.

Hughes

Last time we discussed the several types of publications that came out. I think the one you're talking about is the wallet-sized version.

Campbell

Yes, and I think that the BAPHR guidelines came out in three versions.

Hughes

Yes, exactly.

BAPHR's AIDS Evaluation Booklet, 1985

Teaching AIDS Recognition

Hughes

The booklet, "Medical Evaluation of Persons at Risk of Acquired Immunodeficiency Syndrome," I believe first came out in 1985. Am I right there?

Campbell

I think that would be right.

Hughes

The 1985 edition was edited by you and William Warner. What prompted you to create something as formal as this booklet?

Campbell

I think we wrote most of it in 1984. [looks at it] Yes, copyright 1985, and it did get revised three times.

In the first run, I think we knew that the HTLV-III antibody test was available on a research basis, and July 1, 1985, it became generally available to the community. There

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was at that time a great resistance in the gay community to either ordering that test on somebody, or somebody taking the test, because it seemed like a very final test to be taking. Either you have it or you don't. And it was just fraught with too much fear.

Hughes

So it was more fear, rather than the possibility of being discriminated against if a person were found to have the virus?

Campbell

Well, I think there were a lot of issues. There was the issue of, one, you were getting some very bad information [if the test was positive], and with not very much to do about it except worry and wait to see what would happen. That was probably the major argument against the test. Many other people said, "Don't take this test, because it will go on your record and there will be insurance discrimination." It was for several reasons that people were advised not to take that test, or if they did take it, never, never to divulge the results to anybody, except maybe your doctor. The first printing of this booklet must have discussed that.

The first printing is written along the lines that the physician is dealing with somebody who doesn't know the results of the antibody test, and the test is not exactly the first thing that he does to work up somebody at risk for HIV. The physician might listen more carefully to the patient's sexual history and the symptoms that he presents, and the physical findings that might be suggestive of immunodeficiency, or general lab work that might be suspect of somebody with AIDS, rather than immediately doing that particular test.

Hughes

That edition is copyrighted 1985?

Campbell

This has the copyright 1989. This edition has been considerably revised, because so much happened in four years.

Hughes

In the 1985 introduction, you stated: "The purpose of this brochure is to alert health professionals throughout the country to the protean manifestations of AIDS in its earliest stages, so that proper treatment, referral, and counseling can be implemented without delay." You were trying to teach people how to recognize the various manifestations of AIDS as opposed to just reading an antibody test?

Campbell

Yes. I think we wrote it mainly because many of us had seen more cases of AIDS than had occurred in entire states.

Hughes

You expected this brochure to reach a nationwide audience?

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Campbell

Yes.

Hughes

And did it?

Campbell

I think we got orders for that brochure from people all over the country.

Hughes

How did they learn about it?

Campbell

I don't know. Of all of the organizations of that type, BAPHR was the first one, and I think that many people looked to BAPHR as the leader in that field, as opposed to NYPHR, which would be New York City, or SCAPHR, which would be Southern California, or even AAPHR, which would be American Association of Physicians for Human Rights. I think BAPHR did play a strong leadership role early on.

Hughes

But a physician in Des Moines wouldn't know to contact BAPHR if he encountered a patient that had symptoms of AIDS.

Campbell

No, he would probably contact the CDC or something.

Hughes

But would CDC have referred people to BAPHR?

Campbell

Well, I think one of the reasons that we did this brochure is that there was such a scarcity of well-written articles on the subject. What came out in the medical literature was discoveries about this and that applying to AIDS, but nothing had really been written on the clinical approach to a person who may be at risk for HIV, which people all over the country were seeing more and more of. Probably in Iowa, it would be even more challenging, because you might not know who was at risk.

Here in San Francisco, we pretty well knew who in the private practice office was at risk and who wasn't. It was not difficult to take sexual histories here in San Francisco, because most people were quite up-front about what they were doing. Whereas in other areas, it could be very difficult to take a sexual history, especially about something that frightening. So that was really the focus of that article; there's quite a bit on how to take a sexual history and establish that somebody really is at risk, rather than just testing everybody and finding out who had HIV and who didn't.

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The Worried Well

Hughes

The brochure was concerned with evaluating two groups: the worried well, and "patients with specific symptom complexes which may arouse suspicion of AIDS." What was your point in drawing a distinction between the two groups?

Campbell

Again, the antibody test was not in widespread use then. So the worried well were people who could be at risk, maybe at high risk, maybe at low risk, but at some risk, and who from time to time did not feel well, or might have minor ailments, and how really to sort that cluster of symptoms that they presented with and distinguish them from that other group which seemed to have even more symptoms or a more unique set of symptoms. This was a real grey area, and sometimes we would do the T cells to distinguish those two groups.

Hughes

Isn't there yet another distinction before the antibody test? Amongst those worried well there were those who actually were infected.

Campbell

Yes, there definitely were some that were infected. There was a real, real grey area in that worried well group.

Hughes

And there was nothing much you as a physician could do until you had the test?

Campbell

Yes. Those were the most difficult people. People who had very definite symptom complexes associated with AIDS--they had KS, or they'd had Pneumocystis, or they had cryptococcus--yes, you have AIDS, and that's what we're treating you for.

But then there was this grey area with persons that might have a little fever once a month, or they maybe have lymphadenopathy, or their skin isn't right. Those people were the most difficult to deal with, because you were dealing in a very grey area. We did not know if everybody who was like that would eventually have AIDS. And a lot of the things that they were dealing with were things that normal people have, except that there was an extra concern about them. If a cold doesn't go away in two weeks, they might not have worried about it ten years before, but in this setting, there is a great deal of worry.

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Symptom Complexes

Hughes

Well, in the booklet, a different physician wrote on each symptom complex, and they were lymphadenopathy, fever, pulmonary, gastrointestinal, neurological, and dermatological manifestations. Were those standard categories for discussing symptom complexes, or were they categories those writing this booklet devised?

Campbell

We devised those categories, because they seemed to group around specific symptom complexes. I don't know if anybody else has classified them that way, but that was the way we approached it.

Hughes

Would that be the approach that you would take in a physical exam?

Campbell

Yes, moving through the symptoms, and looking at, let's say, the medical and sexual history, and the physical exam, which would embrace almost all of that.

Neurological Aspects

Hughes

The neurological category was relatively new, was it not?

Campbell

It was relatively new, but nonetheless, we knew that we were seeing people who had peripheral neuropathy, people who were confused, people who had symptoms that would suggest that they'd had a stroke or paralysis--neurological complaints. Headaches. All of these things were seen by primary care physicians or neurologists.

Hughes

In the very early literature on AIDS, to my knowledge, there's not very much mention of neuropathies, for example, associated with this syndrome. Were the neurological aspects of AIDS slower to become recognized than conditions like PCP and KS?

Campbell

One reason that I think we're seeing so much more neurology now than we were then is because antiretroviral treatment can cause neuropathy, but it also prolongs the life span so that patients may have an opportunity to develop those late-stage neurological problems which didn't develop so often early in the epidemic because people were already dead from PCP. Also, if you prophylax somebody for PCP and you prophylax them for CMV and you prophylax them for this and that opportunistic

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infection, eventually they're going to get something that might be directly related to HIV, and it might be neurological, e.g., the AIDS dementia complex or progressive multifocal leukoencephalopathy.

Pulmonary Manifestations

Hughes

Well, you and Walter Blumenfeld wrote on the pulmonary manifestations of AIDS in this booklet. Who is Walter Blumenfeld?

Campbell

He's a pathologist. I know he did quite a bit of research; I think he was a research fellow then. He was doing research on Pneumocystis and how to make the diagnosis of Pneumocystis from sputums--gene probes or things like this.

Hughes

He was at UCSF?

Campbell

Yes, I think his fellowship was over at the VA [Veterans Administration Medical Center, a UCSF affiliate]. He's since moved out of the area.

Hughes

Why did you chose to write on PCP?

Campbell

Probably because I'd seen so much of it. And it seemed to be one of the things I felt quite competent with, because I'd gone to many lectures on it and had sort of a formula for working up people with PCP. I think Steve Follansbee also did some editing on that one, too. All the people who wrote these articles were on the BAPHR Scientific Affairs Committee.

BAPHR's Scientific Affairs Committee

Hughes

The epidemic was the stimulus for forming that committee?

Campbell

Yes. The first committee was, I think, started in 1981, and I don't think I was on that. It was the Kaposi's Sarcoma Ad-Hoc Committee. I think in the summer of 1982, it was renamed Scientific Affairs Committee, and I think that's when I joined it.

Hughes

Well, the reviews of scientific articles on the epidemic that appeared sporadically in The BAPHRON, as far as I know were always signed by you.

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Campbell

Yes.

Hughes

Nobody else was doing that?

Campbell

No, I started doing that. Every time there was a major conference about AIDS, I wrote it up.

Hughes

But you also reviewed AIDS literature.

Campbell

[pause] Hmm, I don't know if I reviewed literature.

Hughes

Yes, you did. [tape interruption; Hughes shows example of a literature review which appeared in The BAPHRON.]

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Campbell

Yes, I think whenever I saw an article on AIDS that was particularly important, I would do a little update.

Hughes

It seems to me that in the early years of the epidemic you were serving as the scientific voice of BAPHR.

Campbell

Yes, I was chairman of the committee.

Hughes

Which I suppose makes it logical that you would be doing all this. But it's also a role that you chose to take on.

Campbell

Yes.

Hughes

Do you have any more to say about it?

Campbell

I think the reason for taking it on was that it just didn't seem like anybody else was taking it on. Bob Bolan had been doing it. I think the first set of safe-sex guidelines [1983] were a little too general, not quite specific enough, and so I was very anxious to take it on because I wanted to make sure that very specific things were heard.

Hughes

Well, BAPHR is not just any AIDS organization; it's an organization of physicians, most of whom are dealing with AIDS patients. It's not the AIDS Foundation or another organization.

Hughes

Did it almost exclusively deal with science as related to the epidemic?

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Campbell

Yes. All we talked about was the epidemic. Things were moving so fast in the epidemic. I think we met two times a month, and every time we met, there was something new that we brought up and that nobody else, other organizations included, was talking about patients. It's not the AIDS Foundation or another organization with a general membership; its membership is physicians.

Campbell

That's correct.

Hughes

So of course, it's very important that members of BAPHR be up to date on the latest scientific information. But I'm also wondering if there's another dimension. Is BAPHR trying to project to the gay community and to the San Francisco community at large that BAPHR physicians have a different sort of information, an important different sort of information, than you're going to get from any other group? If so, it's important for many reasons that you project yourself as scientific experts. It's an image thing.

Campbell

Yes. I felt that we were uniquely involved, because we felt very personally involved from our own lives or our own risk, and then we were seeing a huge amount of this new syndrome in our medical practices. I think we were in a unique situation because nobody else was in that situation. Most physicians weren't seeing that much of the disease, or if they were seeing a lot of it, they may not have been personally at risk. So we had a lot invested in it emotionally. And nobody else was coming out with guidelines for medical management of the disease or guidelines to prevent transmission. What we were seeing was brand new; nobody had seen it before, so it was very important to get out there and write about it or speak about it. It was new, and it was urgent throughout that summer and fall of 1981, because they were seeing more and more of that syndrome there.

BAPHR's Annual Conference, June 1981

Hughes

Do you recall if you attended BAPHR's annual conference in June of 1981?

Campbell

I didn't attend that one, but I know they presented something on PCP, and they presented something on KS.

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Hughes

I've heard that Friedman-Kien spoke, and that he had slides.

Campbell

On KS.

Hughes

On KS. I hadn't heard about the PCP presentation.

Campbell

I think he was there.

Hughes

It was the first that some people had heard about this new disease.

Campbell

I think it was the first that anybody had heard, unless they happened to have somebody walk into their office that had those conditions. Nothing was ever published on it until, I believe, June of 1981.

Hughes

When you talked about the conference with colleagues who had been there, was it noteworthy to them that PCP and KS were occurring in the gay community?

Campbell

Yes. People started talking about it immediately in the summer of 1981. The medical community in general was talking about it. And people at San Francisco General were very, very much attuned to it.

The Kaposi's Sarcoma Clinic and Study Group, UCSF

25. For a history of the KS Clinic, see: Sally Smith Hughes, "The Kaposi's Sarcoma Clinic at the University of California, San Francisco: An Early Response to the AIDS Epidemic," Bulletin of the History of Medicine 1997, 11: 651-688.

Hughes

How closely in touch were you with people at UCSF and the General?

Campbell

In 1981, I wasn't so closely in touch, but in 1982, I believe I started going almost every week--I think Marcus Conant had a meeting almost every week.

It occurred Thursday noon at UCSF.

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Hughes

Yes. It followed his Kaposi's Sarcoma Clinic.

Campbell

Yes, and Thursday was such an easy day for me, because I wasn't in the office on Thursday. I went to almost all of those, probably starting some time in 1982. But I think that those meetings might have started in '81.

Hughes

They did. And did those meetings become a major source of information for you?

Campbell

Oh, yes.

Hughes

Is there a link between BAPHR's Scientific Affairs Committee and the KS Clinic? You would transmit the information that you got from the KS Clinic to your colleagues at BAPHR and perhaps write about it?

Campbell

Yes. And then we had our little journal club. I think that met once a month, and Scientific Affairs met once a month, so that there were two meetings a month that had something to do with the epidemic. We would always bring in new information and sometimes talk about it informally.

The Professional and the Personal

Hughes

Well, maybe this is the time to say a bit more about the dual role that all of you seem to be playing, and how that enhances, or perhaps creates, tensions in your lives. I'm meaning, you are gay men, and you are physicians. Those two roles don't necessarily always go in sync.

Campbell

No.

Hughes

Do you want to say something about that?

Campbell

It was a very stressful time for me. I was never a hypochondriac, but as soon as that epidemic came on, I became terribly hypochondriacal. I would see somebody who had a particular illness in the office, then do tests which may suggest an AIDS-related illness, not come up with any conclusion, and would go on to this and this and this, and start having similar symptoms myself. In 1983 and 1984, I don't think a day went by that I wasn't somehow preoccupied with my own health. There was always something didn't seem to be right.

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Hughes

Did your state of mind have an effect on your practice of medicine?

Campbell

I think it did inasmuch as I became much more focused on it. Because when I did see people like this, I really took them very seriously. But then a lot of times I was very frustrated because of the uncertainty of what was happening.

Hughes

Off tape you mentioned the emotional aspects of dealing with patients who had a disease that you very well could get yourself.

Campbell

Oh, yes.

Hughes

How did that affect the distance that a physician supposedly tries to maintain between himself and his patients?

Campbell

I think a lot of us were prejudiced by that, like just ordering an antibody test on somebody when you were too scared to take the antibody test yourself. I mean, it's [laughs] something that you don't like to do. And in the first two or three years of antibody testing, the majority would not take that test, or we would stall on it.

Campbell's First AIDS Antibody Test

Hughes

Is there a story connected with the first time you did take the antibody test?

Campbell

I was in the Los Angeles Men's Study and I still am. It is part of the Multicenter AIDS Cohort Study (MACS). Enrollment was limited to homosexual men who did not have an AIDS diagnosis as of 1984, when the study began. Presumably no one knew his antibody [status] at the onset of the study since the test wasn't available. I really wanted to be in a study because I thought it was so important. I knew I wasn't going to be in the San Francisco study because I lived west of Stanyan Street.

Hughes

Was that the cutoff?

Campbell

They rang every fourth doorbell between Stanyan Street and Van Ness or something--I don't know what it was, but they made random selections. So I enrolled in the Los Angeles Men's Study. I had my first test done in June, 1984, which was a month after the test was invented but a year before it was

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approved. They wouldn't tell us the results of the tests, and of course, I was very glad that they didn't tell us. However, I kept getting T-cell results, and the T cells were looking okay, so I thought that probably everything was okay.

Hughes

You got T-cells results because you were ordering them for yourself?

Campbell

No, the study did it. In March of 1986, almost two years after I started to take the test, they sent us something in the mail that said, "You can make an appointment at any time to get your antibody test results." So I phoned them and said, "I have just read in your publication about getting an appointment to take the antibody test result." And the person that was at the desk said, "Oh, you live in San Francisco. Why don't you just call this number and you can get your antibody test result." And I said, "Is it that easy to do? I thought you'd have to come in person." But he said, "Oh, since you live far away, you can just call this number."

And that made me feel rather good, because I thought, Well, if they're letting me do this by phone, maybe I'm negative. So I called that number, and somebody answered the phone and said, "You can only get your tests in person." I said, "But I've been told that I can get them over the phone." At that point I felt I was going to get an emergency flight down to Los Angeles to see what the results were. And she said, "Oh, well, what is your code number?" And so I told her my code number, and she told me I was negative. So that was how I got my antibody test result, which was a little bit irregular. I was just really in panic when she said, "You have to come in person." [laughs]

Hughes

Why the two-year gap between taking the test and releasing the results?

Campbell

I think that they didn't yet trust the test. That was already several months after it had been approved by the FDA. That was the month of March of 1986, and the previous July, the test had been approved. I wasn't anxious to get any information; I was just sort of letting sleeping dogs lie. But I was starting to order the test on a whole lot of people at that point, but mostly they were people who wanted it done.

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More on BAPHR

BAPHR's AIDS Survey

Hughes

Well, in 1983, BAPHR started an AIDS survey in which physicians contributed their experience of seeing people with AIDS.

Do you remember participating?

Campbell

Yes. I think Will Warner was the investigator on that. We had a little data sheet that we were supposed to keep on people we were seeing, and I think I might have collected maybe twenty-five or thirty people. I don't think they were supposed to have full-blown AIDS, but they were just supposed to be suspect individuals. We were supposed to write down if they'd had candida, or what their T cells were if they had been done, or if they had lymphadenopathy or neuropathy. We checked off various things, and then I think one or two years later Will Warner came out with results of what happened to all of those patients. As I recall, a couple of my patients turned out to be negative. One had just a little bit of lymphadenopathy, so I put him down. And there was another one that had T cells that were a little bit off, but it turned out to be due to intercurrent infection.

Hughes

And was the study published?

Campbell

I don't think it was formally published, but it was discussed in the BAPHR meeting.

Hughes

This study was to try to define this new disease more closely?

Campbell

Yes. We were just trying to get a handle on the natural history of the disease.

BAPHR's Social Concerns Committee

Hughes

I saw mention of the Social Concerns Committee of BAPHR. What was its purpose?

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Campbell

I think the purpose of that committee was to discuss any issue that had to do with discrimination against gay people, and later on, of course, people with AIDS.

Hughes

In a medical setting? For example, a hospital that wouldn't take an AIDS patient or didn't give proper care?

Campbell

It would be something like that. The committee did some work with the blood bank, I believe. I think they became active on this issue along with the Scientific Affairs Committee. What else did they discuss? I think anything which had gotten into the political arena, and a lot of it did have to do with AIDS.

BAPHR's Liaison with California State Government

Hughes

Did members of BAPHR have specific contacts in government at the local, state, and maybe even federal level?

Campbell

Some did. I think we had a liaison person that went up to Sacramento every other Friday when the [California State] Assembly convened, in response to things like the LaRouche amendments.

Hughes

But not on a routine basis?

Campbell

I think that right along, there was always something in the legislature that pertained to AIDS, and so that was an ongoing thing. There were always bills that affected people with AIDS. And I think for a period of three or four years, Dr. Seth Charney went to Sacramento regularly to deal with that. There were also people who met with the Department of Public Health on a regular basis.

Hughes

How did people juggle these new responsibilities with their practices? How could a physician take time off on a regular basis to drive to Sacramento and presumably spend the day?

Campbell: The person who did that was semi-retired. I think Will Warner became very active in some of those things, and he did not work full-time.

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Political Burnout

Campbell

Early on, my practice wasn't so terribly busy, and so I could do a few things like this, but by 1987, it became so incredibly busy that I didn't want to do any of it. I was really burned out of any of those political activities by 1987.

Hughes

Did you drop out at that point?

Campbell

I sort of dropped out. I've continued to be a member of BAPHR, but my [medical practice] partner, Wayne Bayless, retired in the fall of '87, and the practice responsibilities became incredibly onerous. I was probably an officer in BAPHR and doing a little bit with the Scientific Affairs Committee in 1987-1988. What was the latest publication of this booklet? 1989, yes, I was actually working on that in 1989. It really became a hardship. I was working harder than I wanted to.

Hughes

According to your CV, you were a member of the Scientific Advisory Committee of the AIDS Foundation until 1990.

Campbell

Yes, but not very much into it. Those dates might be stretched a bit. It was mainly about '84 to '86 that I was very active on that committee.

Hughes

According to your CV, '86 is the last year that you were on the Scientific Affairs Committee of BAPHR.

Campbell

That's probably not accurate. I think that I probably got them turned around. I think probably '84 to '86 would have been the Scientific Advisory Committee of the San Francisco AIDS Foundation, and probably '82 to 1990 would be the BAPHR Scientific Affairs Committee.

AIDS as a Disease Spectrum

AIDS Related Complex

Hughes

Please comment on AIDS Related Complex [ARC] as a diagnostic category. Is it still used?

Campbell

That is still used as a diagnosis and there's still an ICD-9 code for ARC. ARC would really be anybody who does not have a

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CDC definition of AIDS, which now includes everybody who is 200 or less CD4 cells. So if you have, let's say, 225 CD4 cells and a specific symptom related to HIV, such as fatigue or diarrhea, you have ARC. ARC may be grounds for disability, but not automatically.

Hughes

So it is a useful category.

Campbell

Yes. It doesn't have a very clear-cut definition; it's that grey zone that's not AIDS but is symptomatic HIV infection. There was a 1982 CDC definition of AIDS, then there was a 1987 definition, and then there was a 1992 definition. Prior to the 1992 definition, ARC was very important, because there were many more people who had ARC, because they had never had an opportunistic infection and you couldn't say that they specifically had the wasting syndrome, which had fairly strict criteria for diagnosis. I think the term "wasting syndrome" was invented in 1987; this put many of the ARC people into the AIDS category.

Current Diagnosis and Prediction of Disease Progression

Hughes

Do you put people with ARC in a slightly different category, or do they all have AIDS in your mind?

Campbell

Well, when I put down a diagnosis for HIV infection I'll put down viral load da da da, CD4 da da da, history this, this, this, this. Like I might say, "HIV infection, asymptomatic, low viral load, CD4 500." Such a person is far from AIDS. Or I would say, "HIV infection, viral load 1 million, CD4's twenty, history, Pneumocystis, M. [Mycobacterium] avium, CMV." That's somebody who's on the extreme other end of the HIV disease/AIDS spectrum. The disease is staged by the CD4 number, the viral load, and all the specific illnesses which a patient has had. A typical ARC patient may be described like this: "HIV infection, viral load high, let's say 100,000, CD4 count 300, history: hairy leukoplakia, recurrent diarrhea." However, this is not a classical AIDS-defining illness. So that's the way I do it.

Hughes

So in your mind, the disease is a spectrum.

Campbell

It's a spectrum. You think of it in the dimension of the viral load, the strength of the immune system, the specific infections the person has had, and maybe also their ability to function. Because you might get somebody who has a high viral

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low and very few CD4 cells, who's had Pneumocystis but is still working full-time, and let's say Karnofsky score ninety, ninety-five. I don't always put the Karnofsky score down, but I think somebody who's making a strict definition of a particular person would include the Karnofsky, the viral load, the CD4's, and the specific AIDS-defining illnesses.

Hughes

So this is a very mutable system too, isn't it? Because of all these scientific parameters that you now are able to obtain, you can place people along a spectrum, but with the understanding that when you go back six months from now, they very well may be in a different place on that spectrum. So none of this is static?

Campbell

None of it is static, but I think that these days when we see people, it's really fairly cut and dried. We know who's apt to be getting ill fairly soon, and we know who's not. If somebody has, let's say, a stable 200 CD4 count and, let's say, a viral load of 5,000, which is relatively low, and they're tolerating a bunch of antiretroviral drugs, and they don't have anything else which is AIDS-defining, we know that we're just going to see that person every three months for a routine visit, and they're not going to be getting sick in the near future.

But if you see somebody whose viral load has gone from, let's say, 10,000 to 500,000, and they're having little fevers, and they've had thrush for the first time, you know that something is going to happen soon, or they've become intolerant or resistant to a particular antiretroviral drug.

Hughes

That really is pretty predictable? People really do tend to progress in that fashion?

Campbell

Yes, and I think you get a lot of predictability through the viral load. If you take into consideration the viral load and the CD4's, plus just the way the person feels, you can get tremendous predictability as to who is going to be around a year or two or longer.

Hughes

This predictability became possible with the ability to detect accurately the viral load?

Campbell

I think there was predictability on the basis of the CD4 cells long ago, and predictability on the basis of what specific opportunistic infections somebody might have had. But then in August 1994, right after the Tokyo meeting [of the International Conference on AIDS], we started doing these viral loads. That added a much sharper dimension to somebody's profile, as to whether they were going to do well or not. Some

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people run very low CD4 numbers but have very low viral loads; those people just tend to do much better than persons with low CD4 counts and higher viral loads.

Hughes

What you're describing is a syndrome that is being defined increasingly more exactly because of technological advances. Right?

Campbell

Yes.

Hepatitis and Evolving Disease Concepts

Hughes

Have you experienced anything else like this in your career, where you had a general definition of a disease, but as the years went on, it became much more scientifically specific?

Campbell

Yes, I am thinking of hepatitis C, which is a disease that's probably been around a little bit longer than AIDS, but maybe not, and that we were calling non-A, non-B hepatitis, or transfusion hepatitis. Only in the last year or two, people have been doing studies about the natural history of hepatitis C. Now people are doing work on the gene types of hepatitis C. There are certain gene types of hepatitis C that are more amenable to interferon therapy than others. So that's a disease that's conforming very much to the same model as HIV.

Hughes

Are you saying that now we have the technology to define it more precisely?

##

Campbell

Hepatitis B became definable around 1971, and screening of the blood supply for hepatitis B was introduced in the early seventies. Many cases of transfusion hepatitis were eliminated, but not all of them, because some of them were non-A, non-B. A few years later, in 1976, we could define hepatitis A, so eventually in the late seventies, we had non-A, non-B. And now they have E and F, so there's non-A, non-B, non-C, non-E, non-F. So the waste basket is getting smaller and smaller, but never ends. I don't know if anybody knows how long hepatitis C has been around. We don't know if the people who died of a viral hepatitis or cirrhosis twenty years ago had hepatitis B or hepatitis C or what they had.

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Hughes

The bloods that were stored for the hepatitis B vaccine trials in the early eighties don't provide information about hepatitis C?

Campbell

It could be. I really never thought much about it from a researcher's point of view. I think in many, many diseases, AIDS included, the natural history changes from decade to decade because the treatment changes.

Hughes

Yes, and in the case of the AIDS epidemic, also the populations being affected. I'm thinking of the disease in Africa, for example, which manifests itself differently in many ways than it does here.

Campbell

Yes, because the interventions are not quite the same. Coronary artery disease is another one in which there are so many new interventions such that people with that particular disease have specifically different problems than they did twenty years ago. Or diabetes.

Hughes

So this evolution of disease concept is nothing new to medicine.

Campbell

No, and there are always new infectious agents, like the hantavirus and [the micro-organism of] Legionnaire's disease. New infectious diseases that may have been seen sporadically before may emerge in epidemics now.

Early Physical Diagnosis of AIDS

Hughes

Please describe what happened when a patient presented himself in your office for the first time, before you had the virus, so up to mid-1983?

Campbell

I think up until 1983, I would focus on the symptom complex. If it was a pulmonary problem, I would get a chest x-ray. You would know whether it was somebody at risk of HIV or at risk of GRID or whatever.

Hughes

Because of the sexual history that you'd taken?

Campbell

Yes. And you would culture many areas of the body, trying to find an answer just why somebody had an infection, why somebody had a fever. Fever would probably be the most difficult thing to work up in those days, and sometimes you would never come to an answer, because it might have been just the HIV running

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wild, and you didn't have a handle on what that was. The person didn't have pneumonia; they didn't have a urinary tract infection; they didn't have colitis; they didn't have meningitis; they didn't have anything but fever, and those cases were the most difficult to diagnose.

But certain of those people who specifically had pneumonia or shortness of breath, I would go through a little workup like I describe in this booklet, getting induced sputum or bronchoscopy for PCP, and treating them for PCP. That would be sort of the end of the story, but often the patient would be back a few months later with something else. You knew that they would be, because you knew that the immune system was impaired. In some of those patients, you would do T cells. Not all, but select patients would get T cells.

Hughes

How would you make that decision?

Campbell

If I really just did not know whether somebody was immunologically impaired or not, and did not have a handle as to what the problem was. And that [T-cell test results] would at least say that this was falling into that category of immunodeficiency.

Hughes

If you knew somebody was immunologically impaired, you didn't order the test because there was nothing you could do with that information?

Campbell

No, there was nothing we could do.

Hughes

Until AZT came along. Is that when the level of immunological impairment begins to make a difference?

Campbell

Yes. To somebody that you thought might be immunologically impaired, you certainly wouldn't give AZT without an antibody test. I heard of persons who went on AZT because they had taken the T cells, and the T cells weren't particularly good. And it turned out that they were negative. Anecdotally, I know of a couple of cases like that.

Let's say starting about 1987, or maybe even '85 or '86 when the antibody test was available, many people would come in who had taken the antibody test, and they said, "What am I supposed to do now?" I would always get the T cells on them. That would give me some notion as to whether they were in any immediate danger of coming down with an opportunistic infection. And if they were below 200 [T cells], I would prophylax them for Pneumocystis. And then starting in 1987, I think, if they were below 200, I would put them on AZT, or even

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some with higher T cells. When we had to send in for expanded-access AZT, we had to state that it was less than 200. Consequently there was a little bit of fudging going on.

Drug Therapy

Expanded Access to Experimental AIDS Drugs

Hughes

Well, explain expanded-access AZT.

Campbell

Every one of these antiretroviral drugs starting in 1986 or '87 first came out under expanded access. One couldn't just write prescriptions; we had to send away for the drug and have it delivered to a specific pharmacy or the office. Then the patient picked it up. But we had to fill out a lot of forms.

Hughes

The patient had to fit strict criteria in order to have access to the drug?

Campbell

Yes. You had to fill out these forms saying this and that, and there were some people that didn't exactly fit those criteria.

Hughes

So that's when you fudged.

Campbell

I did have to fudge some, yes.

Current Therapy

Campbell

With the HIV seropositive patient, several things are done to evaluate the patient: the viral load, T cells, and a history to find out if anything has happened that could be referable to HIV. There are specific recommendations about the start of antiretroviral therapy based on T cells and the viral load, and previous use of antiretroviral agents. It's become much more simplified.

All of that, of course, is tempered by the patient's particular desires. There are some that would still prefer not to be on any antiretroviral drugs; and some will want to take four of them at once, or the more the better. I know somebody now who's been on AZT for five years and only AZT, who has a

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rather intermediately high to high viral load, and who does not want to be on combination therapy or any other regimen.

Hughes

What is your approach?

Campbell

I just explained to him the reasons for the current recommendation of combination therapy. He listened and replied, "Well, no, I still don't want to take anything other than AZT, because I'm feeling fine, and AZT seems to be working, and I don't want to try anything else at this point."

Hughes

You present the information and then it's up to the patient?

Campbell

Yes. I don't feel I can force a patient to take any drug. I can only educate and recommend.

Alternative Therapies

Hughes

What is your attitude towards alternative therapies?

Campbell

Unless they seem quite harmful, I say, "That's okay for you to do." I try not to comment a lot about it, because I don't know a whole lot about it, for one thing, and many of them place a lot of faith in alternative therapy. I think that if they really find them empowering that they should be encouraged to do them, unless it seems that they're taking things in toxic amounts. I did have one patient who had unexplained diarrhea and was taking about thirteen or fourteen different herbal medicines a day that I thought really needed to stop all of them because it could be causing the diarrhea problem.

Hughes

And you said that?

Campbell

Yes, and he agreed to do it.

Hughes

What about cases in which people are using alternative therapy and are not taking orthodox therapy? Is that again their decision?

Campbell

Yes. I think my role is that of an educator, and I can explain to them exactly what has been found: if you do take triple [drug] therapy the viral load goes very low, and we have certain studies that would suggest that people with very low viral loads will do much better. If they're not convinced of that, I can't say, "You'd better take these anyway." The pendulum goes back and forth regarding the efficacy of

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antiretrovirals. Two or three years ago, people were generally against antiretrovirals because of the Concorde study, and now they're pro-antiviral therapy because of protease inhibitors and various combinations that seem to be reducing viral load. So the pendulum's probably going to swing someplace else in a couple of years, depending on what the technology is.

Social Services

Hughes

Where do social services fit in?

Campbell

Well, certainly for somebody who has just taken an antibody test and found out that they're positive, I emphasize the importance of being in a group in which they can talk to other people who are seropositive, through some seropositive groups in the city, or through AIDS Health Project, and make sure that they're becoming adapted psychologically. Social service comes in at a time of retirement. That's another step. Another step is when activities of daily living become difficult, and somebody has to come into the house to help out.

Hughes

You consider part of your responsibility to link patients with these services?

Campbell

Yes. And very frequently, the hospital social worker will be helpful for people who need help at home. People need benefits counseling when they are trying to decide whether to retire or not. I think several steps are identifiable as social crises: the antibody test, coming out to an employer or whatever, or retiring, the diminished activities of daily living, and finally the dying process.

Hughes

I read that case management in San Francisco was not formalized nor centralized until 1986. Is that your experience?

Campbell

You mean how long people should stay in the hospitals?

Hughes

Yes, but also coordination of hospital discharge and community social services.

Campbell

I don't know if it occurred at any specific time, but it just seems like over the years, there has slowly been a movement away from the hospitals, with more and more things done by home infusion services and visiting nurses.

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AIDS Admissions at San Francisco Hospitals

Hughes

Where do you admit patients?

Campbell

The California Pacific Medical Center [PMC], and some at St. Francis [Memorial Hospital]. The bulk at California Pacific.

Hughes

What was the attitude of San Francisco hospitals towards taking on AIDS patients? Were there hospitals that were receptive and others that were not?

Campbell

In my experience, they've all been very receptive. I don't know if that's the general rule outside of the Bay Area. It just happened that the hospitals I was dealing with were--PMC was very good, and so was St. Francis, and I think I had a couple of patients at Ralph K. Davies [Medical Center] and a couple at UC Moffitt [Hospital]. All were very geared up for it. It was no hardship. The availability of consults was always excellent. I always felt that we were very much supported by everybody in the medical community in San Francisco.

Hughes

When did you refer patients to UC?

Campbell

The first couple of AIDS patients that I had in 1982-1983 went to UC. I put them in UC because it seemed like they might have known a little bit more about it at that point. The housestaff was very much aware of what to do.

Hughes

But then it began to even out, from what you're saying. Other hospitals became adept as well?

Campbell

Oh, yes.

Hughes

Do I conclude that there isn't just one AIDS hospital in San Francisco; there are many places with AIDS services?

Campbell

Oh, yes.

Hughes

I'm talking about the early days.

Campbell

I think early on, they were all very aware of AIDS. There were no hospitals that I would single out as places never to send somebody.

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The Bathhouse Crisis

BAPHR's Role

Hughes

Well, you told me last time that you wanted to talk about the bathhouse issue.

Campbell

Oh, yes.

Hughes

According to a The BAPHRON editorial in 1984, Silverman, who of course was director of public health at that time, requested community leadership by BAPHR in the bathhouse crisis. Why did he turn to BAPHR?

Campbell

In 1984, we were really considered to be the experts about AIDS transmission. We had published the guidelines, and we were seeing people with AIDS, and we had a knowledge of gay lifestyle. And so he consulted BAPHR as sort of a panel of experts.

Hughes

He also consulted academics at UCSF and San Francisco General, because some of those people sat on his AIDS advisory committee, as did people from BAPHR. But from that statement, it sounded as though he prioritized advice from BAPHR. Is that how it felt at the time?

Campbell

Yes, but I think he was going to the academic people too.

Hughes

In July of 1984, Will Warner wrote to Silverman on behalf of BAPHR's AIDS Resource Group.

Now, is that the same thing as the Scientific Committee?

Campbell

I don't know what the AIDS Resource Group would be. About that time, there were between twelve and twenty people in BAPHR who were either BAPHR officers or chairs of committees that took a vote on that issue.

Hughes

Warner said, "BAPHR stands ready to assist the [health] Department in transferring the main issue of safe sex and role of the bath houses back to the gay community, if that is indeed

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possible. We can reactivate our dormant program that was being developed several months ago for working with bath house owners. We also have some ideas for setting up a monitoring system with the assistance of other non-medical gay organizations." In July 1984, the bathhouses were still open. They were not closed until October.

Campbell

That's correct.

Hughes

Do you remember this period?

Campbell

Yes.

Hughes

What was behind this statement?

Campbell

I think the bathhouses had posted guidelines, but they might not have been everywhere where one could see them. They did have supplies of condoms. I know that by then, they had to have those two features.

Stances on Bathhouse Closure

Campbell

It was my feeling, and the feeling of many members in BAPHR, that the bathhouses could stay open as long as there was some sort of monitoring system in place to make people extremely aware of everything that they were doing, and precisely how they could transmit AIDS, or how they could contract the virus. That was the general recommendation of BAPHR at that point, which I think is reflected in that editorial.

And then three months later, the bathhouses closed, I think due to political pressures. The academic people at UC--Marcus Conant and Don Abrams--were very much for having the bathhouses closed.

Hughes

Why did they have a different opinion from BAPHR? They were also physicians.

Campbell

I don't know. I don't know if they were active in BAPHR then.

Hughes

They are gay physicians, and they were both seeing AIDS patients. Why did they take a different stand?

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Campbell

I don't know if they were persuaded into the stand, or if it was their own personal conviction.

It seemed like the BAPHR officers were uniquely for keeping the bathhouses open. Our reasoning was that if one is standing around nude in the steam, it's not going to transmit HIV. The big issue was specific behavior rather than specific location of behavior. What our stand was all along was that the place of meeting a person was not so relevant as what specific sexual behavior took place in that meeting place. And that's why we continued to say that it wasn't the bathhouses that were causing AIDS; it was specific types of sexual behavior. Many people felt that there was a lot of unsafe sex happening in the bathhouses. Our feeling was the unsafe sex didn't have to happen in a bathhouse with proper education and monitoring.

Hughes

How much did the fact that the bathhouses are symbolic of gay liberation influence your conclusion that the baths should stay open as long as there is an adequate monitoring system? Or said it a different way: what if the locale were not the baths but the San Francisco Zoo? Do you think BAPHR's stand would have been different?

Campbell

You mean people go to the zoo to meet each other for--

Hughes

[laughs] Well, no, it's preposterous. What I'm trying to get at is: the bathhouses I understand to have been taken as symbolic of the strides that the gay community had made in terms of its own freedoms.

Campbell

Yes.

Hughes

And a government authority was threatening to shut them down. BAPHR was striving to make a decision based on medical and scientific grounds. On the other hand, you are gay men; you're a part of the gay community.

##

Campbell

The bathhouse represented a civil liberty unique to the gay community. It was an arena in which people could meet and become erotic without a lot of social barriers. Attendance at the bathhouses did not necessarily equate with viral transmission. In a utopian situation, the bathhouses could exist, they could be erotic, people could meet, and there would be no virus transmission because everybody was highly aware,

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and doing everything absolutely safely, because they knew that they were in a place that could be very unsafe.

Maybe the city officials, or whoever, concluded that the bathhouses should be closed, because although one is supposed to behave in a certain way in the bathhouses, many people were irresponsible. So they decided the bathhouses should be shut down because certain people were behaving irresponsibly. And they said because the bathhouse gives one the license to have sex with many different partners in a short period of time, if some of these encounters are unsafe, that equates with viral transmission to many individuals.

However, that's going on the presumption that people who go to the bathhouses have unsafe sex. Whereas I think that BAPHR's idea was a little bit more utopian: people will go to the bathhouses and meet, but be highly aware and have very safe sex. I think even Will Warner made a comment that, they will probably have safer sex, because they are in a place where one really has to have his armor on. One would assume that in a bathhouse situation one would be more careful since other clients would seem to be at high risk of HIV transmission, as opposed to a person that one might have known for many months, or years, and was seemingly monogamous.

Hughes

An aspect of the safe-sex guidelines was, Get to know your partner, meaning, Get to know a bit about his sexual lifestyle. So it's almost the opposite argument, isn't it?

Campbell

Yes.

It was people who were saying things like, "Get to know your partner," that made me feel like I needed to take a proactive stance on AIDS risk reduction guidelines, because I felt that that advice could be very misleading. It sounded like a good thing to do, but it's not necessarily the only thing to do to be sure that you're preventing viral transmission. If you don't even know whether you yourself have the virus, how would you know that somebody that you met had it?

Hughes

Did BAPHR have contact with the bathhouse owners?

Campbell

There may have been. I wasn't involved with it. I know we had a couple of town meetings in which bathhouse owners attended, and BAPHR was there, and we discussed the issue. I think the bathhouse owners were certainly not very anxious to do a whole lot to post many signs, or make everything very light and visible.

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Hughes

Because they'd lose business.

Campbell

Yes.

Hughes

Were the meetings hostile?

Campbell

Some of them were a little hostile.

Paul Lorch's "Traitors' List"

Hughes

Well, in April of 1984, before the baths closed, but as a result of, or at least encouraged by, the bathhouse crisis, Paul Lorch listed sixteen people who supported bathhouse closure on a so-called "traitors' list".

Campbell

That was probably about the time we had one of our town meetings. I have to think who Paul Lorch was--

Hughes

He was an editor at the Bay Area Reporter. The traitors' list underlines the divisions in the gay community, because many, if not all, of those sixteen were members of the gay community.

Campbell

Weren't Marcus Conant and Don Abrams on that list?

Hughes

Conant, yes. I don't know about Abrams.

Robert K. Bolan

Hughes

Bolan thought the baths should be closed?

Campbell

I think so. But don't quote me! You'd better get it directly from him. His views weren't clear to me.

Hughes

I think there's no doubt that he endorsed closure of the baths. For a time, he seemed to serve as BAPHR's spokesperson.

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Campbell

He was president-elect for a while, but for less than a year.

He resigned, because he was president of the San Francisco AIDS Foundation [1983-1986]. The bathhouse issue really escalated, and it was clear that his opinion was probably not the same as most people in the leadership of BAPHR.

Hughes

Your perception is that he resigned because his opinion did not coincide with that of the majority of BAPHR membership?

Campbell

That may have had something to do with it, or maybe he was just doing too much already.

Hughes

Do you remember it causing dissention within BAPHR that the president-elect supported bathhouse closure?

Campbell

I just remember that in some vote that we took, and I think it had to do with the baths, that he was the dissenting vote. It seemed that thereafter he was not quite so active in BAPHR. But he continued to be in BAPHR. You'd better ask him for the specific details.

Turbulence within BAPHR, 1984-1985

Hughes

There's a period when BAPHR seems to question its goals. There is an editorial, for example, written in June of 1984 during the bathhouse crisis, which referred to "...two months of turbulence within and without" BAPHR. And then in February of '85, BAPHR held a forum called "Community in Crisis: What is BAPHR's Role?", and you were one of the speakers.

It seemed to be an attempt by the membership to decide if it wanted to play a political role, and if it did, in what areas did it want to play a role. Do you remember?

Campbell

Yes. I think that was a meeting of the general membership of BAPHR. I don't think it was open to the public. That was a rather difficult meeting, as I recall.

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Hughes

"The meeting was a direct outgrowth of the perception that the membership was restive because of recent public actions taken by BAPHR leaders." That quote comes from an article in The BAPHRON about the meeting that had taken place the previous month.

The article went on, "The guidelines for safe sexual practices, a 'position paper' on the bathhouses, and recent public recommendations about HTLV antibody testing have thrust BAPHR into the public arena." What the article implies but doesn't state is that BAPHR's political stance caused some unrest within BAPHR itself. Some of the membership questioned whether taking a political stance was an appropriate role for BAPHR.

Campbell

Yes. I think probably Denny McShane was one of the chief spokespersons. He probably replaced Bob Bolan as president-elect, and Denny McShane was very much in the other direction from Bob Bolan.

Stances on the AIDS Antibody Testing

Hughes

Meaning what?

Campbell

Well, Denny McShane was very concerned about any political people taking away the liberties of people who were gay. And with HTLV-III testing, he took a very firm stance that if that test was to be done, it had to be extremely secret, or maybe not done at all.

Campbell

At that forum, I probably came out and said that the test could be quite helpful. I think I registered some concern about the fact that safe-sex guidelines needed to be awfully strict. I felt that I left that meeting rather unpopular.

Hughes

In June of '86, you participated in a program on the antibody test in which you discussed its clinical applications, highlighting the "exceptional" situations in which the test was useful for gay men.

Campbell

I know we'd had a series of Scientific Affairs Committee meetings on who should be tested and who should not be tested.

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That was still before AZT, and we were still probably not recommending the test for everybody.

Hughes

Well, a year earlier the Executive Board recommended against antibody testing except for "certain special circumstances", which the minutes didn't detail.

Campbell

Yes. And I think almost every gay publication in 1985 came out, like the New York Native came out, with things like, "Don't take the test." There was really a strong movement against the test until AZT was available. When AZT became more broadly available in the spring of 1987, gay men were encouraged to be tested.

The Epidemic's Professional and Personal Impact

Hughes

You've been involved in the epidemic since the start. What impact has it had on you as a physician and also as an individual.

Campbell

As a physician, certainly I have gone from a fairly low-key practice to a very busy practice, which has continued to be very busy since the epidemic.

Seeing so many people with AIDS and with tragedy in their lives, what happened is that while being here in the office and just going through the intellectual steps of what to do for such people, I have become rather detached from them emotionally. I've never had AIDS right in my home, and I have never lived with anybody, or was extremely emotionally involved with anybody, who had AIDS. I've had friends who have had AIDS, and I have been their physician, but I wasn't their primary "hands-on" caregiver, which I think is far more difficult.

I love to see plays or movies or pieces of art that have to do with the AIDS epidemic, like the quilts and the play Early Frost. Some of these things that have come out are very, very important for me to see, because I can sit back and be a spectator and become emotionally involved. I don't have to play my role as doctor, and I can sit back and cry about things.

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We had a little support group for people who are HIV caregivers five or six years ago. My main problem was that I was feeling just intellectually and physically exhausted. There were a couple of other doctors in the group who would break down in tears because of all of the things that they'd seen that day. They were having a very hard time holding themselves together with the death of their patients; they became visibly emotionally involved. One of them spent extra time in the evening at the skilled nursing facility massaging patients. This had become the main thing in her life.

I always continued to do many things outside the office, and I had hobbies that didn't have anything to do with medicine. I remained committed to these hobbies. I continue to be determined not to take the work home with me. I guess that's been my way of getting through it, but then it is wonderful when somebody does present an art form [about] which I can feel very emotional. But there is really no permission to get emotionally involved when you're seeing twenty patients a day in the office.

Hughes

That distancing came naturally?

Campbell

I suspect for somebody who had just started practicing medicine in the throes of the AIDS epidemic, it might be pretty hard to take. I'd been practicing for ten or fifteen years at the time of the AIDS epidemic and been through internships at San Francisco General. I became inured to seeing all this tragedy and continue to think about it in a scientific way. It's just something that I have had to do for survival. I'm not saying it's a very good thing to do, but I think I have to do it to get the work done. But I always thought that I'd like to have the luxury of becoming emotionally involved.

Hughes

Do you have anything else to add?

Campbell

No, I don't think so. I certainly like the work that you're doing, and you're asking such wonderful questions. You must have done a lot of research.

Hughes

Thank you very much.

Transcribed by Shannon Page

Final Typed by Grace Robinson

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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