Pioneering members of the UMMS AIDS research and care community (left to right) Katherine Luzuriaga, MD; Donna Gallagher, MSN, MA; John Sullivan, MD; and Sarah Cheeseman, MD, shared their stories at the panel discussion.
Four pioneering members of the UMass Medical School’s AIDS community came together on April 22 for a panel discussion called Surviving and Thriving: History of HIV Research and Care at UMMS. The panel was hosted by the Lamar Soutter Library’s Office of Medical History and Archives, which has compiled the history of HIV research and care at UMMS—a history that is characterized by scientific curiosity and compassionate care.
The UMMS history is a complement to the National Library of Medicine’s travelling exhibit Surviving & Thriving: AIDS, Politics, and Culture. Now on display at UMass Medical School, the striking exhibit captures the fear and confusion that surrounded the emergence of HIV/AIDS in the early 1980s—emotions that the four experts ignored in order to help patients.
Panelists were Sarah Cheeseman, MD, professor of medicine, pediatrics and molecular genetics & microbiology; Donna Gallagher, MSN, MA, RNC, ANP, FAAN, instructor of nursing in the Division of Family Practice and principal investigator/director of the New England AIDS Education and Training Center; Katherine Luzuriaga, MD, professor of molecular medicine, pediatrics and medicine and vice provost for clinical and translational research; and John Sullivan, MD, professor of pediatrics, molecular genetics & microbiology, and pathology; and longtime vice provost of research.
Dr. Sullivan recalled his early work on AIDS research, which began soon after he read a 1981 report from the U.S. Centers for Disease Control describing a new immune deficiency largely affecting gay men. As an immunologist, he knew that something unusual was happening. His lab received its first National Institutes of Health grant to study AIDS in 1983, funding that continued for 20 years.
“As soon as the virus was identified in ‘83-‘84, we got cell lines,” said Sullivan.
His research group was the first in the area to offer anonymous HIV testing, having developed their own antibody assay. “We knew that it was important for those who were infected to know that they were infected,” he explained.
As a pediatrician, he saw his first pediatric case in 1985 and got involved in drug discovery in 1988. The medical school’s partnership with Boehringer Ingelheim led to the discovery of nevirapine, which is still among the most effective treatments for AIDS as part of a multi-drug regimen. It is also used worldwide as a means of preventing maternal-fetal transmission, a breakthrough that Sullivan and colleagues were instrumental in discovering.
“John [Sullivan] really set us up for [AIDS research], said Dr. Cheeseman, who was involved in the first clinical trial of the early antiretroviral drug AZT. As soon as it became available for treatment, she helped open a clinic here to provide the drug to patients. She was also involved in the early use of nevirapine, which was a complicated process requiring overnight stays by patients for supervised fasts. As a result of this early work, UMMS became part of the international AIDS Clinical Trials Group, a federally funded program that supports the largest network of HIV/AIDS researchers and clinical trial units in the world.
“A lot of time was spent simply taking care of people who were dying,” said Cheeseman, who as an infectious disease specialist cared for gravely ill adult patients. “You had to go back and revisit an earlier time to learn what a doctor does for a patient for whom you can’t do anything.”
Gallagher had similarly wrenching experiences as an oncology nurse practitioner in Boston. There she saw a convergence of people affected by the disease—hemophiliacs, gay men, IV drug users, Haitian immigrants and, despite the then-prevailing belief that they could not be infected, an increasing number of women.
“Most patients we saw were dead in six months,” said Gallaher, who came to UMMS to become part of a two-person AIDS care team that specialized in end-of-life care.
In 1988, Gallagher became principal investigator on a grant that has now supported the New England AIDS Education and Training Center for 27 years. UMMS was one of only four centers set up to train practitioners to care for HIV patients. It is funded by the federal Health Resources Service Administration with support from the Ryan White Foundation and serves all of New England.
“At the time, there weren’t a lot people who were interested in taking care of AIDS patients. There still is a reluctance to care for AIDS patients,” said Gallagher. That is why, in addition to training established practitioners to care for AIDS patients, Gallagher has worked with the School of Medicine to incorporate AIDS care into the second-year curriculum.
A pediatric immunology fellow who joined Sullivan’s lab in 1987, Dr. Luzuriaga recalled her first pediatric patient with HIV, noting that the disease progresses rapidly because the infant’s immune system is not yet robust. “I started from a desire to care for patients and had to figure out how to diagnose early.”
She and colleagues discovered that in pediatric patients, it is especially important to “treat early, treat hard.”
“This works because viral loads don’t get out of control. Once the viral DNA is embedded in the cells, the disease cannot be eradicated,” said Luzuriaga.
Luzuriaga then recounted the story of the “Mississippi baby”—born to an HIV-positive mother who had received no prenatal care. Collaborator Hannah Gay, MD, treated the baby with aggressive doses of antiretroviral drugs and, even though treatment was discontinued, the now four-year-old child has been functionally cured of HIV, meaning that there are no traces of the virus in her DNA. Luzuriaga is hoping to replicate the result in a clinical trial tentatively scheduled to begin this summer.
But despite all the incredible advances that come have about, in part because of work that took place at UMMS, Luzuriaga cautioned against thinking of HIV/AIDS as a disease that is largely manageable, saying, “Despite our successes, HIV is still a problem in the United Sates, but because of our success, there is less money for research and fewer clinicians trained to care for HIV patients.”
Her concluding remark for the panel was, “HIV/AIDS is still with us.”
