by Mary Guinan
The protocol was the same in each city. We were to interview a male homosexual patient diagnosed with Kaposi’s sarcoma or Pneumocystis pneumonia, four healthy homosexual controls, and one heterosexual control. All of the controls were matched by city of residence, gender, race, and age to the patient with Kaposi’s sarcoma or Pneumocystis pneumonia. Therefore, for each case-control unit, there were six interviews, each conducted by the same person.
From tryouts with the form, we expected each interview to last from one to two hours and the collection of specimens at least another half hour. I calculated that the maximum number of interviews I could do in any one day was four—if everything went smoothly. I interviewed each study participant using the approved form.
If written permission were given, I obtained various specimens, including blood, urine, and oral and rectal swabs. For processing, the specimens had to arrive at CDC’s laboratories within twenty-four hours, so I sent them by the post office’s overnight mail. The most fragile—and perhaps most important—specimen was blood, particularly the lymphocytes, the cells that seemed to be destroyed by whatever was causing the disease.
The study was an extensive undertaking. We worked in concert with the established local public health network of city, county, and state health department personnel, who handled most of the logistics. The local health departments first recruited the patients for the study and then found age-matched control volunteers from clinics and private practitioners.
My contact in San Francisco was a public health advisor named Sal. Before I arrived from Atlanta, he had been recruiting the patients and controls. After I registered at the hotel, Sal arrived with large cartons of supplies that CDC had sent in advance to the health department. These included needles, syringes, blood tubes, containers for urine specimens, culture tubes with special media that would preserve the culture specimen for a day or so, alcohol swabs, tourniquets, bandages, gauze swabs, Styrofoam mailing containers, tape, interview forms, and odds and ends. Sal also brought a cooler with dry ice.
I set up shop in the kitchenette of my hotel room, which had a counter with stools. I placed all the supplies for taking specimens on one end of the counter near the wall. At the other end of the counter was a stool, on which the study participants would sit, placing their arms on the counter so I could draw blood.
Depending on the time of day, specimens were either refrigerated or packed in dry ice in the Styrofoam mailing containers and taken to the post office, whose posted closing was 5:00 p.m. (Actually, the doors closed at 4:45 p.m.) I walked (sometimes ran) to the post office with the specimens before closing. At first, I tried to send the specimens immediately following each interview, but I found that the lines in the post office were often so long that I would be late for my next interview. Specimens obtained later in the day would be refrigerated until morning, then packaged up and brought to the post office when it opened at 8:00 a.m.
Sal set up just two interviews the first day, with plenty of time in between to get everything done. After that, the goal was to conduct three or four interviews per day. At that rate, working seven days a week, I should be able to finish my part in two weeks (six case-control units, or thirty interviews). Each day was a little bit easier, but I usually worked from 8:00 a.m. to 10:00 p.m., leaving little time for anything else.
The young men at the hotel registration desk knew that I was from CDC and working on the “new disease.” I explained to them that participants in the study would be coming to the registration desk, and I asked the clerk to call my room to see if I was ready. Often a participant would come early and bring friends. They were directed to the courtyard to wait, where they often met other participants and struck up conversations.
I always marveled at these young men who volunteered for the study. Each took a day of his life to come to the hotel to be interviewed by a federal government employee, who was asking about every aspect of his life, including highly sensitive questions on sexual behavior and drug use. Afterward, the volunteer donated the requested specimens. Although the participants were guaranteed confidentiality, the process was still a considerable invasion of privacy.
Invariably, each participant expressed his reason for participating as “wanting to help.” The San Francisco gay population was well informed concerning the new disease. One openly gay newspaper columnist, Randy Shilts, dedicated his columns to the unfolding story of the disease. Many of the San Francisco study participants had called Randy to let him know that they were part of the study and that I would be interviewing them. He also interviewed those who contacted him and found out not only what questions I had asked but also what they had answered. One of the men I interviewed told me he would be interviewed by Randy the next day, which was concerning because public revelations about questions in a study before it is completed could compromise the answers of future participants. But Randy was careful not to reveal information he obtained until well after the study was completed and published. He eventually wrote the book And the Band Played On (2); the book and subsequent movie covered this study and my work there.* I found it very difficult to read in his book the claims of my interviewing certain persons and their detailed responses—information I would never have disclosed. In short, CDC kept the confidentiality, but Randy, who was a reporter, not a scientist, did not promise confidentiality.
During the second week of the study, one man cancelled his interview, giving me time to do my laundry and get some exercise. It was great to have a break. It was the first time I had had for exercise since coming to San Francisco. (Needless to say, the hotel did not have an exercise facility.) I put on my running clothes, put most of the rest of my clothes into the washer in the lobby, and went out for a run. When I returned, the washer was empty. Hoping against hope, I checked the dryer. Nothing. The wet clothes had disappeared, never to be found, despite efforts by hotel personnel throughout my stay. I conducted the next interview in my running clothes—a t-shirt and shorts—with apologies.
One evening, after interviewing a very tall patient who was built like a football player, I stood in front of him, drawing his blood as he sat on the stool. While the needle was in his vein and the blood running into the tube, he fainted and fell forward on top of me. As we both fell to the floor, I tried to open the tourniquet to stop the pressure on the vein but I couldn’t. I pulled the syringe and needle out. When we hit the floor, my right arm with the syringe hit first and pushed the needle into the palm of my left hand. Because the tourniquet was still in place, blood was running down the patient’s shirt. I finally undid the tourniquet, but not before both the patient and I were covered with blood. I checked him, and his breathing and pulse were fine.
I washed the needlestick wound in my palm with alcohol and tried to squeeze out any of the patient’s blood that might be inside. But I was preoccupied with other things. I was in a sleazy hotel, wearing a bloody blouse, with an unconscious man on the floor covered with blood, and syringes and needles on the counter. I hoped the patient would come to quickly so I wouldn’t have to call for help. The situation would be very difficult to explain.
Fortunately, he awakened. Embarrassed and apologetic, he explained that he usually fainted at the site of blood and was sorry that he had not warned me. I apologized about his shirt.
Because I had not yet collected the needed blood specimens, I asked if I could draw blood from the other arm while he was still lying on the floor. He agreed. Afterward he got up and cleaned himself off, sat for a while, and then left. I was amazed at his cooperation.
I did not think too much about the needlestick then. We knew neither the cause of the disease nor its mode of spread at that point. Our working hypothesis was that either an infectious agent or an environmental agent such as a drug or drug combination was causing the observed paucity of certain blood lymphocytes that resulted in immunosuppression in patients. I completed my interviews during the third week and went home, carrying the hard copy of all the data on my lap on the airplane. The resul
ts of this study were published in 1983 (3).
In 1984, the virus that causes AIDS was identified and eventually named the human immunodeficiency virus (HIV). A blood test was being developed to identify patients who were infected.
On November 29, 1984, approximately two years after the needlestick, I found a spot on my left arm that looked very much like a lesion of Kaposi’s sarcoma—an AIDS diagnosis. It was purple, raised above the skin, and painless to the touch. By this time, it was known that a stick from a needle that was used in a person with AIDS could transmit the virus.
I was frightened but tried to keep calm. I had given birth to my son the previous year, and I knew that the risk of transmission of HIV from an infected mother to her newborn was 30 percent. My son was perfectly healthy. If I were infected, there was also a great risk that I had infected my husband. But he too was healthy. Despite these two auspicious signs, the incubation period from time of infection with the virus to the development of signs and symptoms of AIDS, though not yet well delineated, was thought to average two to ten years. It was still quite possible that I had contracted the disease.
My husband was on a field trip in Mexico, and I could not contact him. (This was well before the availability of cell phones or e-mail.) I went to work that day and showed the lesion to a colleague (the late Sam Thompson, MD). He worked at CDC and at the infectious diseases unit at Emory University School of Medicine, and he had taken care of many AIDS patients. When he looked at the lesion, I saw his expression change. He touched it and asked if it hurt. I said no.
“You have to get that biopsied immediately,” he said, confirming my fear. I wanted another opinion and drove to another facility at CDC, where Harold Jaffe, MD, worked. He also had been part of the KSOI Task Force. He was busy, and his secretary did not want to interrupt him. I insisted, saying it was urgent. He came out of his office, somewhat annoyed. I showed him my arm. He touched the lesion and looked at me.
“Do you remember the needlestick?” I asked.
“You need to have that biopsied immediately,” he answered.
“Harold, do you think it’s possible?” I asked.
“Yes,” he said. “It is possible.”
I went back to my office and called a dermatologist friend to get an appointment. He was not in town, and his receptionist said he would not be back until the next week. I made an appointment for the following Tuesday, December 4. Five days later.
In the meantime, one of CDC’s top administrators came to my office. Obviously, he had been notified. As he was speaking to me, my secretary came into the office. “I heard that you have AIDS,” she said. She was very upset and said she was sorry, but she could no longer work for me because she had three children and couldn’t take the risk. She took her purse and left.
The administrator advised me to get a biopsy as soon as possible. I called other dermatologists but could not get an earlier appointment. It turned out that the annual meeting of the American College of Dermatology was being held in Washington, DC, the following weekend, and most of the dermatologists in Atlanta were either there or en route. It was unlikely I would have a biopsy before Tuesday.
I went home. Physically, I felt fine. If I had the infection, shouldn’t I have other symptoms? Or was I deluding myself?
On Friday, a number of colleagues visited my office and expressed their concern. The word had spread. I explained that I would have to wait for the biopsy.
Later that day, Jim Curran, MD, the director of the CDC AIDS Program, called me. He expressed his concern and offered me the possibility of having my blood tested anonymously for HIV at CDC’s laboratories. Although the test was not yet approved by the Food and Drug Administration and not available commercially, CDC was using it. I thought about this. I asked how it would be possible to keep the specimen anonymous. He said, “We will put a number on it.” I said, “Well, what number are you going to put, number 1?” Someone in the lab would know it was my blood being tested no matter what the number was. I told him no, thank you. I was not ready. I said I would wait for the biopsy.
I spent the weekend worrying. By Sunday, the lesion appeared to be smaller. Or was that my imagination? But on Monday it was barely detectable. By Tuesday, it was gone. I knew then that I did not have Kaposi’s sarcoma because those lesions do not go away. I shook off the mantle of fear I had been carrying and celebrated by canceling the dermatology appointment. What a relief.
However, I neglected to tell my colleagues, who later in the week asked about the results of the biopsy. I showed them my arm. No sign of the lesion. We speculated that the lesion might have been caused by a spider bite.
Everything turned out well, although my secretary found another job and did not return to CDC. It took me a year to get up the courage to be tested for HIV. The test result was negative.
The author in captain’s uniform as a Commission Corps officer of the US Public Health Service, 1984. David J. Sencer CDC Museum
Drs. Mary Guinan (left) and Mary Serdula (right) in the North-West Frontier Province of Pakistan, 1980. Dr. Serdula’s collection
Dr. Guinan, in traditional dress, in an Afghan refugee camp in Pakistan, 1980. Dr. Serdula’s collection
Drs. Mary Guinan (left) and Mary Serdula (right) visiting Pakistani refugee camps, 1980. Dr. Serdula’s collection
Mujahideen in an Afghan refugee camp, asking for weapons to fight the Haj, 1980. Dr. Serdula’s collection
WHO Smallpox Zero poster published in 1972. This poster coincided with the launching of what was termed the “final phase,” which at that time was optimistically expected to result in eradication by the summer of 1974. Copyright WHO, all rights reserved
Shafi Muhammad (middle), Dr. Guinan’s invaluable paramedical assistant in Uttar Pradash (UP), stands in front of the UP smallpox office; the Smallpox Zero poster is just visible in background, 1975. Author’s collection
Twentieth-anniversary celebration of the eradication of smallpox by the “smallpox warriors,” as then–Surgeon General David Satcher, MD, PhD, called them, CDC, 1997. Author is third from right, bottom row. Second from right, Dr. Walt Orenstein. Top right, Dr. Bill Foege, director of the Indian smallpox eradication effort in which the author participated. David J. Sencer CDC Museum
ACT UP protesters at CDC, December 3, 1990. Atlanta Journal Constitution; available from Georgia State University / University Library Special Collections and Archives, digital collection
Dr. Guinan spoke on women’s health at the Women’s Summit in Reno, Nevada, in 2012, sponsored by Senator Harry Reid. First Lady Michelle Obama was the keynote speaker. Author’s collection
Dr. Janet Osuch of the American Medical Women’s Association (right) awards Dr. Guinan the 2014 Elizabeth Blackwell Medal. This award is granted annually to the woman physician “who has made the most outstanding contributions to the cause of women in the field of medicine.” Author’s collection
SEVEN
ACT UP Acts Up at CDC over the Definition of AIDS for Women
THE AIDS Coalition to Unleash Power, or ACT UP, was formed by the gay community in New York City in 1987 after prodding from Larry Kramer, a prominent gay writer and political activist. Kramer challenged gays to fight the perceived indifference of the public to the devastation of their communities from AIDS.
ACT UP was a “direct action” group. Its members wanted to be heard, and their demonstrations at government and corporate entities were loud and boisterous (though nonviolent). ACT UP protests caused sufficient chaos from its “in-your-face,” confrontational approach that many people were arrested. In fact, one of the group’s main objectives was to get protesters arrested: the larger the number, the more likely the media attention. ACT UP was extremely effective in getting its message across. The group’s demonstrations at the Food and Drug Administration, the National Institutes of Health, and pharmaceutical companies often resulted in successful negotiations for ACT UP issues.
A group of ACT UP members focused on women’s issues co
ncerning human immunodeficiency virus (HIV) and AIDS. Because lesbians were actually at a lower risk for HIV than heterosexual women, ACT UP women saw their mission as acting on behalf of all women. (Many black women with HIV/AIDS did not share this view. I heard them angrily denounce ACT UP at meetings on the grounds that the group did not speak for them.) ACT UP’s main goal was to change the case definition of AIDS.
A case definition is a set of uniform criteria used to define a disease for public health monitoring purposes. (It is specifically not intended to be used by healthcare providers for individual patients’ healthcare needs.) CDC uses case definitions to classify and count cases consistently across reporting jurisdictions. Only the state has the authority to require reporting of diseases from healthcare providers, laboratories, or public health agencies. CDC requests that states report certain diseases of public health concern, and then, in cooperation with state and local health authorities, develops the case definition. Having a clear, standardized case definition is a fundamental principle of both public health surveillance and epidemiologic investigations.
I had first encountered the ACT UP women at the 1987 International AIDS Conference in Washington, DC, where I was presenting the first CDC study on women with AIDS in the United States, which included over 1,800 women (1). After my presentation, a group of ACT UP women approached me and asked whether I would support changing the AIDS case definition to include a disease or condition that was specific to women. I pointed out that my study indicated that there was not a woman-specific disease that would identify women with AIDS.