The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Vol. I
Attempts to Reduce the Risk of AIDS Transmission
Patient Counseling
HughesDid 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
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
HughesBut 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,
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.
11. H.W. Jaffee, K. Choi, et al. "National case-control study of Kaposi's sarcoma and Pneumocystis carinii pneumonia in homosexual men: part 1, epidemiologic results," Annals of Internal Medicine 1983, 99:2:145-151.
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
CampbellMy 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?
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?
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
HughesYou 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.
12. For the statement by BAPHR and Irwin Memorial Blood Bank released at a press conference on February 7, 1983, see The BAPHRON vol.5, #3, March 1983.
13. See the oral history in this series with Robert Bolan, M.D.
Hughes
Can you recreate some of the discussion that went into those guidelines?
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."
14. BAPHR Guidelines For AIDS Risk Reduction. (Undated brochure, AIDS Resources Center Archives, Ward 5A, San Francisco General Hospital, unlabeled off-white file box.) See also: J.M. Campbell. Sexual guidelines for persons with AIDS and at Risk for AIDS. Human Sexuality 1986, 20:103-101.
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.
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
HughesBy 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.
15. "Medical Evaluations of Persons at Risk of Acquired Immunodeficiency Syndrome," J. Campbell & W. Warner, eds., Scientific Affairs Committee, BAPHR, 1985.
Hughes
That was why you were hurrying it?
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
HughesYou 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
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?
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
HughesWhat 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.
16. Bay Area Physicians for Human Rights (BAPHR) "Position on Acquired Immune Deficiency Syndrome Related to Transfusion," statement included as separate page in The BAPHRON, vol. 5, #3, March 1983. It is reproduced in the appendix to this volume.
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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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
CampbellThe 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.
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
HughesBAPHR's position that, "secretions and excretions are the most likely vehicles for AIDS virus transmission,"
17. The BAPHRON, vol.5, #7, July 1983, p.216.
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
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,
18. See the oral history in this series with Robert Bolan, M.D.
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
CampbellThat was part of it. We were saying, "Yes, you can still have sex, but try for monogamy." [laughter] If that doesn't work,
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."
19. "BAPHR Symposium: The Physician in the AIDS Crisis," June 24-25, 1983. The BAPHRON, vol. 5, #8, August 1983, p. 219.
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-
The 1983 and Later Guidelines
I have a few more questions on safe-sex guidelines. The BAPHR guidelines first came out in 1983.
20. BAPHR Guidelines For AIDS Risk Reduction [1983]. (AIDS Resource Center Archives, Ward 5A, San Francisco General Hospital, unlabeled off-white file box.)
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.
21. "Medical Evaluation of Persons at Risk of Acquired Immunodeficiency Syndrome," J. Campbell and W. Warner, eds., Scientific Affairs Committee, Bay Area Physicians for Human Rights, 1985.
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
BAPHR Guidelines as a Model
HughesWe 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
HughesThe 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
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.
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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