Adventures of a Female Medical Detective

by Mary Guinan

  They were unhappy with my response. Their position was that women were dying of AIDS but were not being counted because CDC did not count women’s diseases and conditions. How this led to the claim that CDC was “killing women” was not clear. I agreed that women with AIDS were probably undercounted, but I discussed how the new HIV test would enable the identification of HIV-infected women even before they had AIDS. By this time, the scientific evidence showed that AIDS indicator diseases were actually late stages of HIV infection. CDC was then preparing a new case definition for AIDS, which would include having an HIV-positive test. I told the ACT UP women that as HIV-infected women began to be followed throughout the course of their disease, a female-specific disease or condition might be recognized. They became angry and started shouting that instead of being an advocate for women with HIV/AIDS, I was complicit with CDC in “killing women,” and then they left.

  I assumed that these things were said in the heat of the moment and that the issue would eventually be resolved with the new case definition. But it turned out that including a female-specific condition remained a lingering, festering issue for ACT UP. In the early investigations of AIDS, when the cause was unknown, we used the following case definition: “Kaposi’s Sarcoma (KS), Pneumocystis carinii pneumonia (PCP) or other opportunistic infections (OI) in a patient not previously known to be immuno-suppressed.” In September 1987, CDC announced a revised case definition of AIDS that did not include a woman-specific disease but did include a positive HIV test.

  In January 1988, Cosmopolitan magazine published an article titled “Reassuring News about AIDS: A Doctor Tells Why You May Not Be at Risk” (2). Written by a psychiatrist, it essentially told women that so long as their “genitals were healthy,” it was okay to have unprotected sex even if their partner were HIV positive. It was outrageous.

  The story reflected a widespread belief that women could not get HIV/AIDS through penile-vaginal intercourse. Even among physicians and scientists there was a group that persisted in denying that women were susceptible (unless they did the “unthinkable,” such as having sex in something other than the missionary position). At the same AIDS scientific meeting where I presented the study on 1,800 women with AIDS, mentioned above, a scientist from the National Institutes of Health presented a poster showing electron microscopic images of the vaginal wall that purportedly demonstrated why it protected women from HIV infection. The undercurrent of the belief was that a “good girl” could not get HIV infection. And if she did, it was because she was doing something like injecting drugs or having anal intercourse.*

  In response to the Cosmopolitan article, the ACT UP women took action. One of the group members called me, and we discussed the article. I agreed that it was irresponsible and could do considerable harm. In fact, I had already contacted the magazine and offered to write an article on the real risk of HIV for women. Cosmopolitan was not interested. Nor would it publish a letter to the editor pointing out the inaccuracies in the article.

  I learned that ACT UP had an appointment to meet with the author, Dr. Robert E. Gould, in New York City. They asked if I could attend. I declined, fearing the possibility of arrest if the usual group chaos occurred. Apparently, the subsequent meeting was tense, and the physician stood his ground and refused to retract his statements. The women were so angry that they were determined to “take Cosmo down.” I shared their anger.

  ACT UP planned a protest at the magazine’s editorial offices. Over a hundred activists protested in front of the Hearst Tower in Manhattan. The protest was widely covered by the media and spurred a number of talk shows, including Phil Donahue’s, to feature topics on HIV in women. The physician interview, the protest at Cosmopolitan, and the talk shows were videotaped by ACT UP women and made into the documentary film Doctors, Liars and Women: AIDS Activists Say NO to Cosmo. I was so pleased when I saw a news clip of the protest with signs proclaiming, “Yes, the Cosmo Girl Can Get AIDS.” Eventually, Cosmopolitan printed a half-hearted correction.

  So I had interacted a bit with the ACT UP women. But CDC itself had yet to be targeted by the group. Then, in January 1990—a couple of years after the Cosmo incident—ACT UP officially set its sights on CDC. On the first day, January 8, hundreds of activists from around the country came to the state capitol in Atlanta to protest Georgia’s sodomy law. The following day, the group protested in front of the CDC main building on Clifton Road.

  My office was in that building, and I could see the line of chanting marchers with placards that read “CDC is killing women.” The placards appeared to be handmade, and many had graphic portrayals of female genitalia. Several of the group tried to break into the building but were rebuffed by police in riot gear, including helmets and batons, who were lined up in front of the building. It was chaotic. A few protesters managed to hoist a lavender flag up the flagpole in front of CDC. In the end, close to fifty people were arrested.

  Local media coverage was surprisingly sparse. Of course, the graphic placards didn’t help. But I also don’t think that the media understood the protesters’ concerns. How exactly was CDC killing women? What was this protest about? During ACT UP protests at the National Institutes of Health and the Food and Drug Administration, the messages had been clearer: get more AIDS drugs, improve clinical trials, let HIV patients participate in experimental drug trials, fund more AIDS research. By contrast, the women from ACT UP who led the CDC protest wanted a change in the case definition of AIDS with regard to women. This was a concept not easily understood by the media or the public (nor, I suspect, by most of the protesters).

  In the months following this first ACT UP demonstration, CDC met with ACT UP protesters to see if they could come to some agreement on their case definition demands. I was not involved until I was invited to the last of these meetings. Negotiations had not gone well, and apparently the leaders asked to meet with CDC women scientists. Ruth Berkelman, MD, the deputy director of the Center for Infectious Diseases, and I were the two scientists who met with two ACT UP leaders.

  It was tense right from the beginning, with ACT UP demanding that yeast vaginitis be included as an indicator disease in the AIDS case definition. We were shocked. We discussed how common yeast vaginitis is in US women without HIV infection. In fact, it is estimated that 75 percent of women in the United States will have at least one yeast vaginal infection in their lifetime. Considering the climate at the time, the inclusion of vaginal yeast infection as an AIDS indicator disease would have caused widespread panic among women. But all our reasoning fell on deaf ears. The ACT UP members abruptly left the meeting with some vague warnings.

  I did not know it at the time, but CDC’s refusal to budge on this case definition would precipitate the second ACT UP protest at CDC in December 1990. And this time, I would be one of the targets.

  I had no further contact with the group. I changed jobs within CDC that year and moved from administration back to the HIV/AIDS unit, which was located in an office park several miles from CDC headquarters. The second ACT UP protest began at the main facility, but somehow the group discovered that my office was not there but at the office park. The protest moved to the office park, but the police were unaware of this move. The office park had no security.

  When the protesters arrived, someone had the good sense to lock the glass entry door to our building, which was next to my office. We called the police. There was chaos outside; lots of people were chanting. I could not see the messages on the placards, and I was still unaware that I was a target. The police had not yet arrived, but we were locked in and felt pretty safe.

  Then the unexpected occurred. The mailman came. He had a key to the building, and he opened the door. The protesters burst in. They ran all over the place, including into people’s offices. I heard them ask, “Where is Mary Guinan?” My assistant whispered, “They are calling your name!” She was terrified. I took the sign with my name on it off my office door and told her to go inside and lock the door. I sat down at her desk. Fortunately
, no one recognized me.

  They started chanting, “Mary Guinan, you can’t hide. We accuse you of gynecide.” (Gynecide means “killing women.”) The chants kept up. Fifty or so protestors were roaming through the building looking for fax machines, one of which was next to my assistant’s desk. I caught a glimpse of what they were trying to send: a message to all news and media outlets, stating that CDC had relented and that vaginal yeast infection would be now part of the AIDS case definition. But they were having difficulty getting an outside line, which required a certain code. They kept pressing 9, which was the incorrect button, so the faxes did not go through.

  I wondered what was keeping the police. They finally arrived, and so did the media. The police were all wearing yellow rubber gloves. (The fear of contracting AIDS had prompted the use of rubber gloves when handling AIDS protesters.) The protesters started chanting, “Your gloves don’t match your shoes; they’ll see it on the news.” Finally, the police entered the building. The protesters lay down on the floor all over the building and would not move. They were carried out one by one by the police. The protesters kept up the chant about the gloves, alternating it with the Guinan-gynecide chant (3).

  I never saw the video footage of the protests because there was minimal television coverage of the event. There was little attention paid by the print media as well, likely because they did not understand the issues surrounding a case definition. The protesters did not achieve their objective of notifying the national media that CDC had changed the AIDS case definition to include yeast vaginitis, but only because they could not get the fax machines to work. I often wonder what would have happened if they had pressed the right button to get an outside line.

  The invasion of our offices seriously traumatized our employees. The employee-assistance workers set up a series of counseling sessions for all those affected. And CDC improved security in all its facilities.

  For a long time after this incident, I received anonymous postcards featuring a target with my face in the middle. This was well before the Internet, but organizations had some way of communicating with people all over the nation. Subsequently, every time I gave a talk at a medical meeting, a plant would be in the audience, and it was always a woman. No matter what the subject of my lecture, someone would get up in the audience and shout, “Stop killing women!” This lasted for several years, until I left CDC.

  The case definition of AIDS has changed several times. Most recently, it is defined as the late stage of HIV infection.

  EIGHT

  The HIV-Infected Preacher’s Wife

  I FIRST met her when she was a patient at the infectious diseases clinic at the county health department in Georgia. Infectious diseases was the new name given for what used to be called sexually transmitted diseases (STDs), and before that venereal diseases (VDs). Can you imagine the courage of the patients who visited such clinics before the name change, sitting in large, open waiting rooms for hours with no privacy, subjected to the scrutiny of all who passed by? Infectious diseases was hopefully a less humiliating name.

  The name change was prompted by the emergence of the AIDS epidemic in the early 1980s and the fear of people with human immunodeficiency virus (HIV) infection. One cannot exaggerate the fear and hysteria throughout the country during the 1980s concerning those infected. During this time, Ryan White, a child with hemophilia who was infected with HIV from contaminated blood products, was expelled from a middle school in Indianapolis because of his infection. Parents and teachers strongly supported keeping Ryan out of the school. In Florida, the parents of three brothers with hemophilia who were HIV positive filed a federal lawsuit against the county school board to allow their children to attend public school despite their diagnoses. Although the parents won the lawsuit in 1987, their home was burned to the ground by vigilantes, and they moved away.

  If it were widely known that HIV-infected patients visited the county health department, people would likely keep away. Indeed, the coordinator of the Alcoholics Anonymous meetings at the department reported that attendance had dropped because of rumors that AIDS patients might be in the STD clinic. So the clinic changed its name.

  I saw Lir* for the first time in 1986. I was the only woman physician at the clinic, and the nurses steered the female patients to me. Lir had driven over 120 miles from a small town in another state. This is her story.

  She had grown up in the small town, the only child of a single mother. When Lir was in high school, her mother developed breast cancer. The family belonged to a church, and while the mother was dying, the preacher and the congregation attended to her. When her mother died, Lir was courted by the preacher, who was twenty years her senior. She eventually married him around 1980 and had two children, a boy and a girl.

  Sometime later, it was revealed that the preacher was sexually molesting both of their children. The preacher pled guilty to this offense and went to the state prison. Lir was determined to keep him there for the rest of his life.

  In 1985, a test for HIV became available, and soon many states began testing prisoners. One day, Lir received a call from the state prison. Her former husband had tested positive for HIV. Both she and the children must be tested. Fortunately, the children tested negative. Lir, however, was positive.

  Lir had not yet reached her thirtieth birthday. She was tall and thin, with beautiful eyes, pale skin, and long, straight brown hair, which she wore behind her back with a clip. When she walked, her back was so straight that it seemed like a steel rod was holding it in place. Lir worked as a waitress in a restaurant in the small town and was the sole support of herself and her children. She told me that if anyone found out she was HIV positive she would lose her job, and she believed that the children would be driven out of the elementary school. That is why she drove to Georgia, where she knew no one, for her healthcare.

  On that first visit, she had no symptoms or signs of AIDS, but she knew it was just a matter of time. No effective treatments for HIV were yet available. Over the several years I saw her, she was preoccupied with what would happen to her children when she died. She had no close family, and no one except her healthcare providers knew of the HIV infection.

  What kept her going was her effort to keep her former husband in prison. He was coming up for parole, and she asked the social workers at the clinic to help her write testimony against him. She had to be very careful, however. On the one hand, she wanted the parole board to know that he had infected her. On the other hand, she was terrified that such testimony would become public. So in the end she decided not to reveal that he had infected her with HIV. Even without this knowledge, her testimony convinced the parole board to deny him parole in 1989, and he would not be eligible for parole for five more years. When that time came, she vowed, she would be ready to testify again.

  In the early nineties, I saw her for the last time. Her infection was stable, but treatment was still not available. She told me she could not afford to drive to Georgia anymore. Gas prices were too high, and it was difficult to get the time off work.

  I asked if I could do anything to help her. She shook her head, tears rolling down her cheeks. She left before the traffic got too bad.

  In 1995, a combination of antiviral medications was found to be an effective treatment for HIV. Clinic personnel contacted HIV-infected patients who were eligible for the treatment. Lir was on the list, but her phone had been disconnected. She was not listed in the telephone directory of her town. We were unable to find her.

  NINE

  Few Safe Places

  THE NEW-YORK Historical Society’s exhibition AIDS in New York: The First Five Years opened in 2013, thirty-two years after the first reported cases of AIDS. In his review of that event (1), writer and historian Hugh Ryan described the exhibition as minimizing the suffering of gay men, especially by soft-peddling the widespread homophobia of the time. I have not seen the exhibit, but Ryan’s words brought back many memories of gay men whose suffering with AIDS was compounded by an unrelentin
g and vicious homophobia that seemed to sweep the country in the eighties and nineties.

  Before AIDS was recognized in 1981, I worked one day a week in a local health department’s sexually transmitted diseases clinic, which served many gay clients. As a member of a CDC task force, I interviewed gay men in Atlanta, New York, and San Francisco for various studies. And I worked in a clinic that treated patients with human immunodeficiency virus (HIV) and AIDS. So I knew many gay men professionally and heard their stories.

  THE CHURCHGOERS

  In the late 1970s, I was asked to speak about hepatitis B at a Catholic church in Atlanta, where a gay and lesbian organization met monthly. (Hepatitis B can be a chronic infection that can lead to cirrhosis and cancer of the liver.) This infection was such a problem for gay men that efficacy trials of the hepatitis B vaccine were conducted exclusively among volunteers in this group.) The church was lovely. It was located in the heart of Atlanta and surrounded by gardens of flowers in full bloom.

  I was nervous before the talk, as I had never spoken at a church before. I arrived early and realized that a religious service, the Catholic Mass, was in progress. So I slipped in the back, sat down in a pew, and observed. I saw about thirty or forty men and women take Communion. At the end of the service, each person walked to the altar and embraced the priest.

  My presentation was in the church basement, and I was impressed both by the group’s leader, a well-informed man, and by the ensuing lively discussion on changing risky sexual behaviors. I subsequently became friendly with several of the participants, who lived in my neighborhood and whom I would see occasionally at the supermarket.