Adventures of a Female Medical Detective

by Mary Guinan

Within a decade, AIDS had arrived. One day I met one of the church-group members at the grocery store. I did not recognize him at first, because he had a large hat covering most of his forehead. Then I saw the marks on his face: multiple purple lesions indicating Kaposi’s sarcoma, an AIDS diagnosis. He told me he had been evicted from his house and was living with someone he barely knew, who also had AIDS. “It is like having leprosy,” he said. “Even the church rejects us.” Indeed, the church would no longer permit the gay and lesbian group to meet there. This man had lost his job because of his appearance and was afraid he would become homeless. His family had disowned him.

  His story was not unique. There were hundreds of men disowned by families and rejected from their places of worship. The homophobia was so open and hostile in cities across the country that there were few safe places for gay men in those years. Below are a few of their stories.

  MARIO

  Mario was a Hispanic laboratory technician in his late twenties who lived in San Francisco. He volunteered as a control for the first national case-control study of AIDS patients. When I took his medical history, he told me he had been gang-raped the previous year and suffered a torn rectum. Multiple complications required him to be hospitalized for more than a month. He said it was not uncommon in San Francisco for Hispanic gangs to hang around outside gay bars and attack clients, especially other Hispanic men, who were deemed “a disgrace to their community.”

  MOSES

  Moses was an HIV-positive black teenager who lived with his parents and attended a community college in Atlanta. His father was a police officer who had told Moses that he would kill him if he ever found out his son was gay. His mother discovered that Moses was cross-dressing when she found a dress and high heels hidden in his closet. She feared for his life. Moses was desperate to find another place to live, but he could not find a job.

  Moses regularly came to the county health clinic with various complaints. He did not have any connection with the gay community, and he did not want it. His sexual orientation was a deep, dark secret. He did not have a car and did not want anyone to know that he was going to the clinic. To reach it from his home, he took two buses. Sometimes he missed his clinic appointment because he didn’t have bus fare. He dropped out of school and eventually killed himself with one of his father’s guns.

  CLAY

  Clay was another clinic patient, in his early thirties. He was in terrible pain. He had AIDS wasting syndrome, a condition that includes weight loss, emaciation, and uncontrollable diarrhea. He also had many very painful oral ulcers that kept him from eating. It was difficult for him to swallow pills, and because his muscles were severely atrophied, injecting pain medications was difficult. He was too weak to walk, so a friend brought him to the clinic in a wheelchair.

  In his last days, Clay begged me to give him enough medication to see him through his final days. We had tried a morphine drip, but the morphine caused nausea and vomiting. This was before pain medicine skin patches were available, which would have limited such side effects. He had to wear adult diapers, and the persistent diarrhea caused severe chafing of his genital area. The only medication that seemed to give him relief was Valium. If the pills were crushed and mixed with warm water, he was able to sip the solution through a straw, allowing him to relax enough to get some sleep, but nothing really worked very well.

  Clay’s family refused to see him. His partner, the man whom he believed had infected him, left him. It was understandable that Clay welcomed death.

  It’s true that many good people came together to help relieve the suffering of gay men during those times. But what could they do to relieve the invisible but real wounds caused by blatant and unforgiving hatred? Years after their sons died of AIDS, mothers have told me how they will never forgive themselves for abandoning their children during the time of their greatest need.

  I am thankful that I have lived to see the great advances for human rights in our country for gays and lesbians. Did AIDS play a role in these advances? I believe it did. AIDS galvanized the gay community to organize a movement that I equate with the black civil rights marches in the American South. These brave persons exposed the horrors and suffering of those discriminated against for not being heterosexual.

  TEN

  Expert Witness for John Doe, the Pharmacist, 1991

  I NEVER met the hero of this story, and I do not know his real name. Nevertheless, I was an expert witness for his defense.

  “John Doe” filed a complaint with the New York State Division of Human Rights, charging Westchester County Medical Center (WCMC) with employment discrimination. The division conducted a hearing and concluded that Doe was illegally denied employment as a pharmacist because of a handicap. WCMC faced the choice of either hiring Doe or being denied federal funding. The medical center stalled, claiming that Doe did not have a handicap but was rather a threat to patient safety. The progress of the case through the legal system resulted in a landmark decision that human immunodeficiency virus (HIV) infection was a handicap and that persons with HIV infection were therefore protected under existing laws preventing employment discrimination on the basis of that handicap. The civil rights impact of this decision is incalculable. How the US public health system, which is invisible to most Americans, worked to support Doe’s civil rights is part of this story.

  BACKGROUND

  I learned about John Doe when I served as one of the expert witnesses in the case’s administrative court hearing in 1991, but I never knew the details of the case until more than twenty years later. As part of the background for this book, I read the judge’s decision (1) and the affirmation of the judge’s decision by a three-judge panel of the Civil Rights Reviewing Authority (2). I was surprised to learn that, before my testimony, I had not received important information about the case that was available at the time. Because even now the details of the story are sketchy, I tried to contact Doe for an interview through his lawyer, Evan Wolfson, who during the hearing worked with Lambda Legal. Wolfson responded, in 2014, that he had lost contact with Doe many years ago and could not contact him on my behalf.

  John Doe had pursued this case for more than six years despite the risk of his identity’s being exposed and the great risk of being subjected to backlash, ridicule, and lifelong employment discrimination were the case unsuccessful. Given the climate at the time—marked by widespread fear and hatred of persons with HIV infection or AIDS—Doe showed remarkable courage. One can understand why the anonymous term John Doe was used to protect his privacy.

  LEGAL ISSUES

  The case was initiated before 1990 and was therefore governed by section 504 of the Rehabilitation Act of 1973. This act states that it is unlawful for a program or activity that receives federal financial assistance to discriminate against an otherwise-qualified person with a handicap solely on the basis of that handicap. The Americans with Disabilities Act, passed by the US Congress in 1990 (during the legal proceedings of this case), provides even greater protection against employment discrimination for persons with disabilities.

  MEDICAL DETECTIVES AS EXPERT WITNESSES

  Because CDC epidemiologists frequently become experts in particular diseases, especially new or rare ones, they are sought after to be expert witnesses in medical malpractice and other medically related lawsuits. CDC tries to protect its employees as much as possible from testimony unless it is clearly in the interest of the public’s health. Depending on the circumstances, expert witnesses may be well paid, and whichever side has the most resources usually has the best witnesses. As a federal government employee, however, a CDC physician cannot accept payment for serving as an expert witness, and so there is no financial motivation to testify.

  You may recall the movie The Verdict, in which a Catholic hospital is sued for malpractice. Paul Newman, who plays the plaintiff’s lawyer, believes he has locked in one of the hospital doctors as a witness. But he soon discovers that the defendants have paid the physician off, and the only expert witness he
can get is a doctor with no particular expertise in the medical issue at hand and little credibility. In real life, casting doubt on the credentials and opinions of expert witnesses is a blood sport between opposing legal counsels. Lawyers spend a great deal of time and money searching the background of opposing witnesses, scrutinizing their publications and public statements, malpractice claims, and previous testimony. They even look for any kind of witness indiscretion, such as drunken driving arrests. Any “dirt” that is dug up is fair game and can be used to embarrass, humiliate, or otherwise discredit the witness. At the time of John Doe’s hearing, in 1991, no Internet existed to facilitate the search, so legal assistants or even the lawyers themselves conducted research on medical experts.

  HHS v. WCMC was heard before Judge Steven T. Kessel in a New York City courtroom in August 1991. This was a hearing, not a trial, so there was no jury present. The judge reviewed the evidence provided by each side and made the final decision. An administrative law judge such as Kessel has the power to make a number of prehearing decisions. One decision made in this case was to limit the number of expert witnesses. CDC and the National Institutes of Health (NIH) are both Health and Human Services (HHS) agencies, and each agency was asked to provide only one expert witness for the hearing. I was the CDC witness, and David Henderson, MD, was the NIH witness. The defense team witness was Peter Mansell, MD, an oncologist in private practice in Houston. Dr. Henderson and I were both members of the Commissioned Corps of the Public Health Service, a uniformed service headed by the US surgeon general, and we were told to wear our uniforms. Because we both held ranks of captain (equivalent to Navy captain), HHS assumed that the uniforms would enhance our authoritative appearance.

  The CDC director at the time told me that I would be the expert witness but would not say why I was chosen. I was but one of many CDC scientists with experience in examining and interpreting HIV/AIDS epidemiologic data. However, I had just stepped down as the associate director for science, a position that required top-secret security clearance and a background investigation by the Federal Bureau of Investigation (FBI). My security clearance might have been a factor in my selection as the expert witness, as the defense counsel could hardly do a more thorough background check than the FBI (although, in hindsight, this might have been wishful thinking). Incidentally, during that background check, a neighbor whom I barely knew called and told me that the FBI had contacted him for an interview about me. He was upset because he thought I had given his name to the FBI as a personal reference. I told him I had not given his name to the FBI, explained the reason for the background check, and offered my apologies. He called back a few weeks later and said that he had told the FBI during the interview that he disapproved of me because I had not changed my name when I got married. Apparently, the FBI did not have a problem with the neighbor’s report because I survived the background check.

  The HHS Office of General Counsel in Washington, DC, informed me that Michael Astrue, the general counsel at the time, would be the lead attorney for the case. CDC also has an Office of General Counsel, and one of its lawyers, Verla Neslund, was assigned to help me prepare for the hearing. Wanda Jones, DrPH, a CDC scientist in the HIV/AIDS program, was an HHS consultant, so it was a three-woman CDC team, very unusual at that time.

  WHAT I KNEW BEFORE TESTIMONY

  HHS had selected this particular case as a “test case,” that is, a case with the purpose of setting a precedent. The goal was for the court to determine that HIV infection was a handicap covered by the 1973 Rehabilitation Act.

  About John Doe

  John Doe was a registered pharmacist licensed to practice in New York State. He was working as a pharmacist at another hospital when he applied for a position at WCMC. After an interview with WCMC personnel in October 1986, he was told that he would be hired after passing a preemployment physical examination, and that he should expect to start work in December. The position he had applied for was the midnight to 8:00 a.m. shift in the main pharmacy, which included a 5 percent higher pay differential. In December 1986, Doe went to WCMC for his preemployment physical. Somehow, the physician who performed the examination found out that Doe was HIV positive. Doe himself did not reveal his status, and he could not have been tested for HIV without his signed consent, so something very unusual must have occurred.

  The blood test for HIV (antibody) was first licensed in 1985 amid a great deal of controversy concerning who should be tested and why. Because no effective treatment for HIV infection yet existed, why should people be tested? A positive test would surely be a stigma, resulting in a severe downside for the person tested, with little tangible benefit. Many gay-rights organizations opposed testing on these grounds. The greatest public health benefit from the test would have been its use in the blood supply industry to screen donors and eliminate all HIV-positive blood. But even here controversy existed. Did the screening agencies have to report to public health agencies the names of volunteer blood donors who tested HIV positive? If so, would such reporting significantly reduce the number of blood donor volunteers and thus endanger the nation’s blood supply? There were many more reasons for and against HIV testing. For a person at risk, knowing his or her HIV status would hopefully lead to safe sexual behavior, preventing transmission to partners. It would also help healthcare providers give advice on the many associated health issues and potential therapies for HIV infection.

  Doe must have gotten tested voluntarily sometime between 1985 and 1986, and a worst-case scenario ensued. WCMC refused to employ him, and he was “outed” as HIV positive. WCMC never contacted Doe again. There was no job offer, nor did he receive notification that he would not be hired. This outcome was exactly why so many civil rights activists at that time advised against HIV testing.

  Before my testimony, I did not know how the WCMC examining physician found out Doe was HIV positive nor how Doe had in turn learned that the physician had discovered Doe’s HIV status. But Doe must have, because in December 1986, he filed a complaint at the State Division of Human Rights charging that he was not hired for the pharmacist job solely because he had HIV infection (3).

  About Westchester County Medical Center

  WCMC’s attorneys responded to Doe’s complaint in February 1987, stating that they declined to hire Doe for “medical reasons which they considered to be compelling,” and rejected the claim that Doe was handicapped (4). WCMC is a hospital and medical center that, between 1986 and 1991, annually treated more than 22,000 inpatients and over 100,000 outpatients. It was also a tertiary- and acute-care medical center serving a seven-county area of New York State known as the mid-Hudson Valley. It has an open-heart surgery center, organ transplant services, a comprehensive cancer care center, a pediatric intensive care unit, and a level-1 trauma center. At the time of the lawsuit, its annual budget was $252 million. Approximately 60 percent of WCMC’s patients received services that were reimbursed by Medicare or Medicaid. WCMC received $107 million annually, or more than 40 percent of its budget from federal funds. If this support were terminated, it would be a crippling financial blow to the medical center. The WCMC pharmacy employed forty pharmacists, including supervisors, to work in their main and satellite pharmacies throughout the medical center campus. The main pharmacy is open 24 hours a day, 365 days a year. The duties of all pharmacists and supervisors include the preparation of parenteral products, that is, those administered to patients by injection, such as cancer drugs and nutritional supplements.

  In November 1987, when it became clear that HHS was going to take action to terminate the medical center’s federal funding, WCMC offered Doe a compromise, a position in a satellite pharmacy with the restriction that he could not prepare parenteral products. WCMC outlined a scenario in which the pharmacist, while preparing parental products, could prick his finger when using a syringe and needle and not realize it. If his blood were on the needle, it might then contaminate the parenteral medications that he was preparing, and therefore HIV could be indirectly transmi
tted to the patient. Because pharmacists at the hospital did not provide direct patient care, there was no risk of direct HIV transmission from pharmacist to patient.

  Both HHS and Doe rejected the offer as a solution to the discrimination complaint. Doe would not be able to work at the main pharmacy; therefore he was ineligible for the midnight to 8:00 a.m. shift and its accompanying 5 percent pay differential. In addition, Doe would not be eligible for a supervisory position, because supervisors were required at times to prepare parenteral products. The case dragged on in a stalemate until December 1990, when HHS filed an action to terminate federal funding to WCMC. The WCMC attorneys responded immediately, requesting an administrative law judge hearing. The request was granted, and the hearing was held from August 5 to 12, 1991, in a New York City courtroom.

  PREPARATION AND TESTIMONY

  Our CDC team’s best guess was that the defense attorneys would focus on what evidence existed about the risk of HIV and any other infection in the healthcare setting, either from the healthcare worker to the patient or the patient to the healthcare worker. I particularly searched the medical literature for even one case of a hospital-acquired infection in which a pharmacist was found to be the cause of the infection. I found none.

  Within two years of the first case reports of AIDS, all the modes of transmission of HIV infection had been established: sexual intercourse, transfusion of blood or blood products, intravenous drug use with contaminated needles, and transmission from mother to infant during delivery or breast-feeding. These modes of transmission were similar to those for hepatitis B, and because healthcare workers were at considerable occupational risk for hepatitis B infection, the concern was that they might also be at increased risk for HIV infection. So CDC began a nationwide surveillance study in 1983 of healthcare workers who had needlestick or exposures from blood or body fluids of AIDS patients to determine their risk of developing HIV infection after exposure. After three years of study, the results showed that the risk of transmission was a relatively low 0.35 percent, compared to the 19 to 27 percent risk for hepatitis B infection from exposure to a hepatitis B needlestick (5). Other studies confirmed this lower risk. In fact, Dr. Henderson, the NIH expert witness, published a study showing that no HIV infections occurred in 332 NIH Clinical Center workers who had been exposed to blood or body fluids from AIDS patients (6).