The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Vol. I
BAPHR's AIDS Evaluation Booklet, 1985
Teaching AIDS Recognition
HughesThe 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
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?
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.
The Worried Well
HughesThe 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.
Symptom Complexes
HughesWell, 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
HughesThe 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
Pulmonary Manifestations
HughesWell, 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.
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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