Title:A Call to Compassion

The Early Years of AIDS Care at Georgetown

In his fourth year of medical school in 1985, pulmonologist Chip Read, MD (M’85, R’86, W’89), was acting intern in the medicine wards at Georgetown when he met the young patient he’d never forget. The 17-year-old was suffering from Cytomegalovirus colitis, an AIDS-related diarrheal illness. And he had a do-not-resuscitate order.

“He knew he had AIDS. His family was supportive, which was atypical, and it helped him be more at peace with his diagnosis. And amazingly, he was a DNR. He knew he was going to die, and he knew he didn’t want the CPR.”

Read pauses, taking a deep breath.

“He was so at peace with his life, as brief as it was. When he was discharged home, I wrote him a letter to say I’ll always remember him as I go forward in my career.”

He died shortly after. The patient came from a strong, loving family, Read says, with three boys and three girls.

“The next year as a resident I took care of his middle brother who died of AIDS under my watch. Then during my fellowship the third brother came in with Pneumocystis and died. The family lost all their sons, like we were in a war,” he says, shaking his head. “We were in shock, seeing a young healthy population being wiped out.”

A Time of Fear

The first reported case of AIDS at (now MedStar) Georgetown University Hospital occurred in 1980, when a previously healthy gay man presented with Pneumocystis pneumonia and died two weeks later.

As the AIDS epidemic swept through American communities during the next decade, health professionals at Georgetown sought to provide compassionate care in a time of widespread anxiety and stigma that today can be hard to imagine.

The disease was spreading rapidly among healthy men, often very young men, withering them away, and the survival rate was zero. Was it airborne, or could it be caught from door knobs and water fountains? Little was certain, but as the mysterious illness emerged, fear came with it.

At hospitals across the country, including Georgetown, meal tray deliveries were sometimes left outside the patients’ rooms. Chaplains were hesitant to enter rooms too, recalls Sal Jordan, S.J., a nurse and chaplain at Georgetown University’s hospital in the 1980s and 90s. His training in psychology helped him understand the fears that care providers faced, and also the complex needs of the patients who were often stigmatized and alone.

“I often think of those years as my best work,” he says softly. “It brought me in front of a totally new group of people I’d never had contact with before. If I had not been a nurse, I could have been more fearful of AIDS work.”

“The patients would ask me, ‘Why don’t our chaplains come in? We see them at the nurses’ station, but they don’t come into our rooms.’ I would explain that they are fearful of AIDS and of how it’s contracted.”

HIV wiped out the immune system. For many with decades of infectious disease experience, those years were difficult beyond words. The epidemic turned the profession upside down, says nurse historian Ella Curry, PhD, who spent nearly 25 years at Georgetown in infectious diseases.

“We had incredible physicians who had lived through the discovery of penicillin and believed the medical field had mastered infections. But HIV shook that ground. It was challenging everything we knew, because it was attacking the immune system in a way that antibiotics and antivirals we’d come to rely on were no longer effective. It became a real challenge at the bedside for all health care professionals.”

Outside many rooms on the hospital’s seventh floor were yellow isolation carts indicating an infectious patient. The carts held footies, head gear, gowns and masks for visitors entering the room, and double-gloving became the new protocol.

“I never faulted any of my staff who didn’t want to go into the room,” says Curry. Rather, she would have a conversation with them to consider the impact of their actions. “It telegraphs to our patients that they were in the category of the untouchable.”

Balancing Act

In the early years of the epidemic, before coming to Georgetown, Curry cared for AIDS patients in the Boston area. The challenging work inspired her to study health care ethics, world religions, and human responses to plagues at Harvard Divinity School. Her transformative experience in ethics training proved critical for her continued work in AIDS care.

Grief and loss were palpable, she says. In those early years, the infectious disease division alone was losing nearly two patients a week. “Under the leadership of nurse manager Jill Cunningham, Adult Medicine’s seventh floor west in the hospital’s Main Building became a haven for many patients with HIV,” Curry says, adding that her beloved colleague passed away in 2016.

“Jill was very intentional in creating an atmosphere of welcoming and open care to patients with HIV. She hired nurses who shared that approach. Georgetown University Hospital never had a dedicated AIDS unit per se—such units were both a benefit and a problem. It’s a benefit because you get highly specialized care 24/7. But the downside is that if someone knows you’re a patient on 7-West, then they would know that you must have HIV. For us it was always a balancing act in terms of nondisclosure of the disease.”

A desire for privacy complicated the disease from the start. Curry recalls that as it emerged, HIV seemed to take hold in a few distinct populations known as the four H’s: hemophiliacs, Haitians, homosexuals, and heroin users. Gay men formed the vast majority of people with the disease. In addition to fear about HIV itself, many men did not want their families to know they were gay. Discrimination against the LGBTQ community and American cultural norms of those years meant many kept their sexuality private—at work, in school, and at home. Stigma caused many patients to ask that their diagnosis be kept from friends and family.

“It was very difficult to see young healthy people just be devastated by this disease, and most of all the shame that they felt from having this disease,” remembers Princy Kumar, MD (R’90), who leads the infectious disease unit today. “So much has changed. At that time, it was an extremely stigmatizing disease. People didn’t want to be associated with anybody who had anything to do with HIV infection. It left people lonely and desperate and wanting some form of companionship.”

The Thursday Night Clinic

With so much public fear and misunderstanding about transmission of the virus, no hospital in the District wanted to be identified as the AIDS hospital during those pretreatment years, recalls infectious disease specialist Mary Young, MD (R’87, W’89).

“They thought other patients would be afraid to come to that site. So at Georgetown, the choice was made to create a discreet full-service clinic on Thursday nights to care for those with HIV,” Young says.

The vision for the comprehensive clinic came from Phil Pierce, MD (M’75, R’80), who drew together a team of people from the hospital in 1986 to make it happen. It was open from 6-9 p.m. each Thursday evening, in Gorman next to the old student health center.

Kumar notes that the evening hours worked well for patients because most needed a companion to help them get there, too weak to come alone. It also worked for the many volunteer clinicians who were more available to donate their time after hours. Team members not only shared medical insights at weekly meetings but openly discussed complex ethical dilemmas they were facing, Pierce says.

Although many university and hospital leaders were not outwardly vocal about their support, they helped make the clinic happen in subtle ways, says Young. An obstetrician would do pap smears and exams. Caregivers from pulmonology, phlebotomy, and psychology participated as well.

“They all created an interdisciplinary whole-patient care clinic with streamlined, fast-tracked service,” says Young. “A patient came in with a cough and fever on a Thursday night, and Chip would get them scheduled the next day for a bronchoscopy at the hospital.”

The gay population in D.C. had mixed feelings about coming to Georgetown for their care, recalls Read, with many wondering if they would be treated with dignity at the Catholic hospital. He and doctors Kumar, Young, and Pierce made a concerted effort to go out into the LGBTQ community and assure physicians that their patients would
be welcomed, and could expect comprehensive and compassionate care. Georgetown’s work in clinical trials offered additional appeal.

James Lavelle, MD (W’86), the late cardiologist and researcher who also worked in the Thursday Night Clinic, led the university’s close partnership with various pharmaceutical companies to develop new HIV therapies. After his death, Kumar continued his vision by further strengthening those partnerships, including NIH, by creating the infrastructure for the research unit.

“Through this effort, Georgetown has been involved with the development of almost every single HIV medication,” Kumar adds, transforming the lives of countless people living with HIV.

“Dr. Kumar turned our clinic into a powerhouse of research,” Young recalls.

The nursing team provided a strong anchor to patients with complex problems, says Pierce, recalling the impact of espoused Catholic values of the archdiocese and in turn the hospital.

“At first there was vocal animosity towards this program,” Pierce says, but the caregivers would not be deterred. He notes that the initial grassroots effort gained administrative backing over time and ultimately was welcomed and supported by the university’s president, Timothy Healy, S.J.

During those years, the university’s relationship with the LGBTQ student community was evolving. In the 1980s, the Gay Rights Coalition of Georgetown University Law Center filed suit against the university to seek official and equal status for LGBTQ student organizations, under the D.C. Human Rights Act banning discrimination based on sexual orientation. After nearly a decade of legal action, including motions before the Supreme Court, the university finally consented as the courts sided in favor of the students.

“There seemed to be a big change after that,” Pierce recalls. “Shortly after, doors opened up for us and suddenly the hospital administration asked us how they could better support us. That’s when they gave us a dedicated space in Kober-Cogan.”

Through the clinic, Father Sal Jordan and Peggy Magee set up one of the hospital’s first patient support groups. The Georgetown staff who volunteered there were an exceptional group, says Father Sal.

“A lot of it was on the quiet side without much publicity or anything. I always considered it my most essential work as a Jesuit. I was very fortunate to work with the nurses, doctors, and social workers through the HIV clinic—how loving they were, and nonjudgmental.”

Societal judgment around being a heroin user or being gay had an outsized negative impact on research and care for people with the sexually transmitted disease, says Curry.

“We lost a decade due to stigma. In the 90s we were dealing with the fallout from the 80s,” she explains. “There was this false sense of security in the early years because people heard and read that only certain groups were at risk. People would see those categories, and when they did not see themselves on the lists, they would believe themselves not to
be at risk and also that it was not their concern.”

She pauses.

“And we live with the legacy of that still.”

Curry recalls the many times patients begged them to not document anything that would reveal they had HIV, including one high-ranking government official who planned to tell everyone that he had TB. “He thought that was more acceptable. Don’t put HIV on my death certificate, he said.”

As if the disease itself weren’t devastating enough, the stigma around how it was acquired made it far worse, says Curry. “Living with that level of fear
of discovery evokes a lot of negative entropy, in terms of someone ever achieving a sense of wellbeing.”

Helping Families in Turmoil

Many families struggled as their sons quickly declined in health and often at the same time revealed their previously private sexual identity.

“I remember one whose father was a top lawyer in his hometown, mother a nurse, an aunt a nun,” says Father Sal. “Their son’s illness created lots of turmoil for them. He didn’t even want to go home for Thanksgiving.”

Father Sal convinced him to go and reconcile with his conservative Catholic family, and agreed to accompany him and help bridge the divide.

“He had just a few months left to live and had lost a lot of weight. We drove home to his family an hour away and spent Thanksgiving there with them. My presence was a big help to him and to his family, just by offering understanding and support. A month later he died in a Washington hospice care facility about 3 in the morning, and his family called me to be with them at his bedside. I was glad they were reconciled.”

“Far too many people had been banned from families once their diagnoses were known,” says Curry. “They wanted to be with nieces and nephews again but were forbidden to touch them.” For some, they were invited to family occasions but were seated at a separate table alone, with disposable plates and cups.

Curry remembers a sentinel event that greatly impacted the Infectious Disease team. A young man with advanced AIDS who had insisted on keeping his diagnosis from family, came in to the hospital critically ill and was placed on a respirator in the ICU. He had been living his dream of working for the government in the nation’s capital, and when his parents and brother arrived from the Midwest they were completely stunned by their son’s sudden illness.

Some members of his care team believed the family should be told of his underlying condition, and frequent ethics consults took place for staff. How can the family make decisions about his care when they don’t know his diagnosis? But Mary Young, his physician, honored her promise to him of nondisclosure.

“After he died, Mary had a meeting with family and explained everything,” Curry says. “She explained why we withheld the information. They were enormously relieved to know that there was something to explain his critical illness, and that he was being cared for by a team like Mary’s, who honored their commitment to the patient. But the family grieved that he never trusted them with that information. His mom said they could’ve helped him carry that burden. She was heartbroken that his decision had deprived him of their prayers and their love and support.”

From that point forward, Curry says, their practice changed. They shared parts of the story with new patients in similar circumstances, and had them identify at least one person they could trust who would know their situation fully, and who could make decisions for them when they were no longer able.

Magee and Father Sal organized a yearly Mass of remembrance in the hospital chapel, where the names of all the patients lost to HIV were read— 80 to 90 per year during the peak.

“We lost a lot of patients,” says Young. “Protease inhibitors combined with older nucleoside drugs turned the tide, people stabilized, people reversed course. Some are still alive today. But 1987 to 1995— those were really rough years.”

A Generation of Medicine Shaped by HIV

Watching their teaching clinicians stumble into the AIDS epidemic, not knowing exactly what to do as they lost patient after patient, left a lifelong impact on medical students at the time. But they shared in the privilege of caring for an especially vulnerable group of individuals, accompanying those in great need, even in high-risk scenarios.

Mary Young remembers the pregnant woman who came in with pneumonia, received an HIV diagnosis, and was transferred to her team for care. It was a second marriage for her husband, who had done a lot of international travel and who also presented with HIV. By then they were treating patients with AZT, which she took and gave birth to healthy twins.

“Both parents had significant infections,” says Young. “She died in 1994. But he got on new inhibitors and responded, and lived long enough to raise their children. People who could make it to 1995 had a good shot of surviving.”

Kumar recalls the leadership shown by Mother Teresa, who came to Washington, D.C. in 1988 to set up the Gift of Peace Center to house and provide care through end-of-life for people with AIDS. Mother Teresa told Pierce that she saw the population as analogous to the people on the streets in Kolkata, India: homeless, frail, and abandoned by their families.

Located in Northeast D.C., the Center was staffed by Mother Teresa’s order of religious sisters, the Missionaries of Charity, and supported by the Archdiocese which provided a former orphanage for the site. Per Mother Teresa’s request, Georgetown University agreed to provide linens, remove waste, and provide a case manager as well as physicians to volunteer there—contributions that are now equally shared by MedStar Georgetown University Hospital and continue today under Kumar’s leadership as the medical director of the Gift of Peace.

Despite the overwhelming medical and societal challenges of the time, Georgetown’s Catholic and Jesuit values gave hospital caregivers the language and grounding to do their work, caring for the marginalized despite widespread fear and stigma, says Young.

“It was an honor to work with that team. They humanized the illness, and recognized the person behind the disease, someone with hopes and dreams and family issues—with much more going on that just the illness you see. They were treating the person above all, not just the disease,” she says.

“The people who showed up for this work exemplified cura personalis, that deep compassion. They were ready to risk their life to care for others.”