News » Observations » Observation: On HIV/AIDS » Chapter Three: "A Translator of Sorts"

Chapter Three: "A Translator of Sorts"

C.J. Trent-Gurbuz

It looked like any other serious publication, white with black text, simple binding, dated June 5, 1981, volume 30, issue 21.

“I will never, ever, as long as I live, forget the moment I walked out of [Ross Hall’s] Room 117, the typical first-year medical student lecture hall, to where our mailboxes were,” recalls Lawrence “Bopper” Deyton, MD ’85, MSPH. “I just looked at it and knew. Oh my god. This is … I just knew. It changed everything.”

The thin report he held in his hands, the Centers for Disease Control and Prevention’s (CDC) Morbidity and Mortality Weekly Report, detailed the cases of five young men, all gay, all living in Los Angeles, who had been diagnosed with Pneumocystis carinii pneumonia. It was the first sign that life for so many Americans — including Deyton, his friends, his loved ones—would never be the same.

HIV Red Ribbons

Deyton had always been attracted to policy and to social change, particularly the gay and lesbian movement: “In the 1970s, there were many of us coming out and having healthy, happy lives.”

But personal happiness was only one piece. What Deyton soon discovered was that the stigma of homosexuality as a psychopathology, despite its removal from the American Psychiatric Association’s list of mental disorders in 1973, remained embedded in the U.S. consciousness, especially in the health field.

As an early 20-something earning his master’s in public health from Harvard University, he recalls, he’d gone to the student clinic with a horrible cold. He filled out the usual health questionnaire, answered honestly when asked about his sexuality, and waited to be seen.

“I was there for symptoms of a sore throat or the flu; all the doctor cared about was homosexuality and suggested that I go to a psychiatrist,” Deyton says. “[The doctor] didn’t address my reason for coming in. I was pissed off. My access to appropriate health care was hurt by that doctor’s ignorance of up-to-date knowledge. That’s what got me in touch with other people who were suffering similar discrimination. I grew up in the ‘60’s and participated in and was impacted by the Civil Rights movement, the women’s movement, [and] I felt that I had a right to be who I was and be treated with respect.”

So Deyton moved to Washington, D.C., in the mid-’70s and started full time in health policy and public health. He worked on Capitol Hill for a member of Congress and then for the Office of the Surgeon General; outside of his day job, he was heavily involved in helping to create a network of gay and lesbian health care providers and activists. His aim was twofold – educate and treat – with the ultimate goal of translating current knowledge into practice.

“There was a movement of setting up clinics that were safe, places free of stigma for gay men and lesbians to go get their health care from informed and unbiased providers. That was happening around the country in large cities in the mid-’70s, late-’70s, [and] I was part of that,” Deyton recalls. “The other part was helping to educate. How do we educate health providers — nurses, doctors, psychologists, psychiatrists, public health people —so they will know and respect the current evidence-based standards, that [homosexuality] is not a pathology, not an illness.”

It started with the Washington Free Clinic, held in a church basement in Georgetown; on Saturday mornings, gay doctors, nurses, and other health care professionals would see gay patients, on a sliding- scale fee. When clinic politics turned sour, Deyton, along with a handful of others, decided to separate and open their own clinic.“It was just a small group, six or eight people, who just came together and said, ‘We can do better.’”

So was born Whitman-Walker Clinic, named after renowned gay poet Walt Whitman, who cared for wounded soldiers in Civil War-era Washington D.C., and Mary Walker, the first female Army surgeon who served during the Civil War in the District and is, to this day, the only woman to receive the Medal of Honor.

Deyton also had another way of “doing better”: he decided to apply to medical school at the George Washington University (GW).

“I was working full time five or six years out of graduate school, and I did my pre-med courses at Northern Virginia Community College, nights and weekends as a working stiff, and applied and was accepted to GW,” he says. “I think I was accepted at least in part because GW was an open and accepting place; being gay was not a stigma there.”

So, as a 29-year-old, Deyton embarked on a clinical path, with the benefit of a public health background — and found himself negotiating his scholarly priorities with a devastating virus affecting every aspect of his personal life.

“HIV was a surprise. [At the time,] I’m seeing from a public health and intellectual perspective what’s going on, but I’m also reading the MMR Report … and I’m going, ‘Shit, I’m at risk.’ Then I start to have friends who are diagnosed, and then my own lover at the time was diagnosed with AIDS and admitted to GW Hospital when I was a third-year student. And my best friend was diagnosed when I was a fourth- year student – also admitted to GW Hospital, and he died there. I’d be on rounds as a medical student, and I walk into a room and find friends and acquaintances that I didn’t even know were sick … . So, yeah, it affected my medical education.”

Equally devastating at the same time was the case of one of his closest friends, a close college friend who had moved to D.C. for law school. Just in her early 30s, she was diagnosed with Stage III breast cancer and admitted to GW Hospital, where she underwent a mastectomy while Deyton was doing his third-year surgery clerkship.

“It was her breast cancer diagnosis and surgery and also my lover, my friends, who were in those hospital beds sick and dying, and my job was translator of ‘This is what we know, this is what we don’t know,’” Deyton says. “And so I came to see my role as a physician also as a translator of sorts from both sides of the bed. It did make my medical education a bit different for me. I would’ve preferred it not to be that way, but on the other hand, it made me the doctor I am.”

HIV Red Ribbons

While Deyton concentrated on his clinical responsibilities, activists and advocates were gearing up for a fight that would dominate the late 1980s and the ’90s. Most gay men and lesbians, particularly those who had seen friends and loved ones lost to HIV, felt abandoned by the government and President Ronald Reagan, who didn’t tackle the virus until the end of his second term in 1987. By then, according to the San Francisco Gate, more than 36,000 Americans had been diagnosed with AIDS, and close to 21,000 had died.

It was in the midst of this political climate — with homophobic rhetoric from conservative leaders such as Senator Jesse Helms, Jerry Falwell, and Pat Buchanan ruling political news coverage – that a group of New Yorkers, many of whom Deyton counts as friends, formed the AIDS Coalition to Unleash Power, or ACT UP.

Their goal, the New York Times recounts, was to speed up drug approvals, expand access to the latest therapies for those affected by AIDS, including women, minorities, the homeless, and IV drug users, and shut down the spread of misinformation. Their demonstrations were bold — infiltrating the New York Stock Exchange and protesting in front of high-profile targets like the New York City General Post Office the night before the IRS tax deadline — and they were heading toward Washington, D.C.

Deyton, over the course of those early years, graduated from GW and was in the middle of his residency at the University of Southern California. He, however, desperately wanted to get back to the District and continue working on HIV/AIDS. As his mentor, Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health (NIH), later recalled, Deyton applied for a competitive clinical associateship at NIH, but the East Coast was shuttered by a blizzard on the eve of his interview.

Undeterred and with the help of his partner, Deyton took the first flight he could find to Dulles International Airport. With no taxis available, he rented a limousine stranded at Dulles and rode to the NIH, which was empty because of the blizzard, save for Fauci and a building security guard. Deyton tracked Fauci down, and before long, had talked himself into a job — and into a position that again put him in a translator-of-sorts position.

In May 1990, ACT UP protested in front of the NIH, urging scientists to develop AIDS drugs more quickly. They crafted makeshift tombstones, lay in repose to represent those killed by the virus, and burned an effigy of Fauci. Deyton was witness to their efforts, as were his patients at the NIH participating in AIDS research trials. Deyton secured their IVs and ensured their safety so they could join the demonstration.

“The ACT UP members got so educated so fast, and they became really, really astute thinkers about clinical research,” Deyton says about the activists. “Credit where credit’s due, Tony Fauci invited the activists in to the NIH process. It was hard at first. Figuring out each other’s language and how to respect each other, and then really listen to what’s important to people who have the disease and how to translate that into good science, that can be very hard. Science moves at its pace, and things don’t move as quickly as one would like – and that is very real when people are dying. There were some painful things that happened around then. It was just a challenge.”

For his part, Deyton, who was completing a fellowship in infectious disease at the NIH, began helping to set up community-based AIDS research that Fauci had authorized.

“I created something that was called the Community Programs for Clinical Research on AIDS,” Deyton says. “It was the first truly community-based research program NIH ever did.”

At the time, the NIH’s approach was to fund universities, which spearheaded research and recruited patients to come to the university; Deyton did the opposite. “We actually went to community providers and said, ‘Can we do research with you? Can we help you? What are the research questions that you think are important? How can we support you to do research in your clinic, in your homeless shelter, in your substance abuse treatment facility? How do we work here instead of making all of your patients go to universities?’”

It was a way, he explains, of establishing trust and partnership with the community, a strategy that exemplified and separated AIDS research from all other disease research at that time; those affected played a critical role in research priorities and how research was conducted. Without the push of the activists and Fauci’s insistence of listening to them, Deyton says, AIDS research may not have sped up as rapidly it did. As a result, medications hit clinics faster, and the death toll began to trend down.

HIV Red Ribbons

After a dozen years at the NIH with Fauci, Deyton was lured to the Department of Veterans Affairs. “The VA is the largest single provider of care in the country, thus the VA … cares for more people with HIV infection that any other health system in the country; 25,000 to 30,000 veterans are living with HIV,” he says. “They asked me to help translate the current standards of the best HIV care to veterans around the country. As a clinician, and also as a public health guy and a guy who specializes in HIV, I got to use that whole system to create and improve quality of care for veterans living with HIV.”

With the advent of electronic medical records, Deyton had a powerful tool at his disposal: he could find out which patients were taking which medications, what patients’ lab results were, and exactly how to improve care across the entire VA health care system.

“In a pretty short period of time, we were able to document that the VA health care system was delivering the highest quality HIV care in the nation,” he says, adding, “and in government, no good deed goes unpunished, and so I kept getting other things to do there.”

Eventually, however, Deyton found himself back where he started: the GW School of Medicine and Health Sciences (SMHS). Now, as the Murdock Head Professor of Medicine and Health Policy, senior associate dean for clinical public health, and professor of medicine, he’s continued to lead the way in HIV/AIDS care and education — this time with the next generation.

His vision, developed with Jeffrey S. Akman, MD ’81, RESD ’85, vice president for health affairs, Walter A. Bloedorn Professor of Administrative Medicine, and dean of SMHS, builds on the connection between provider and community.

Deyton’s three-day summits, an integral part of GW’s new clinical public health curriculum, are designed for medical students to apply their scientific and medical knowledge to identify and address public health and community health problems. “How Physicians Can Help Create an AIDS-Free Generation,” for example, takes place just after first-year medical students have completed their infectious diseases bloc, when they learn the virology, immunology, diagnostics, and clinical management of HIV/AIDS. “My vision was to bracket medical students’ new scientific knowledge with public health/population health knowledge to allow them to learn the roles that clinicians must take to help resolve important community health problems outside of the clinic or hospital,” Deyton explains.

The summit puts the onus on students to come up with answers: “If you are going to get to an AIDS-free generation, you know that there is a large percent of people [who are infected with HIV] who don’t even know it; well, Doctor, how are you going to [find] everybody?” Deyton asks. “Similar question: OK, Doctor, you found them, congratulations! How are you going to make sure they’re going to get the care they need and the drugs they need? If doctors aren’t going to [make sure health imperatives are communicated and acted on], who the hell is? Here at GW, we want our graduates to be able to do that.”

As students tackle these questions with innovative solutions — expanding needle exchange programs to tattoo parlors and pharmacies or establishing a web-based, peer mentorship program, for example — they hear from experts, including Deyton’s mentor, Fauci, and make community and clinic visits. With GW’s proximity to Capitol Hill, students are also able to present to local and national leaders. Past HIV summits, for instance, have concluded at the White House, where the AIDS Czar convened a panel of federal experts to critique students’ proposals.

In a sign of the summit’s success, proposals from 2015 were included in the District’s new HIV/AIDS Action Plan, “The 90/90/90/50 Plan: Ending the HIV Epidemic in the District of Columbia by 2020.” The plan aims to have 90 percent of residents aware of their HIV status, 90 percent of people with HIV get treatment, 90 percent of those in treatment see their viral load suppressed, and to reduce the number of new HIV cases by 50 percent.

“We started the summits with HIV, we’re doing something similar for childhood asthma and for obesity,” Deyton says. “Our students are right here in Washington learning medicine. They should be able to articulate their ideas about how to improve community health to not just the AIDS Czar, but to the City Council and to the leaders of their health system and their community partners. It’s important that today’s and tomorrow’s physicians are trained to take a larger community health and policy perspective. I believe clinicians have several roles as translator; certainly translating medical information for their patients and families. But also as translator between the health system, health officials, and the communities in which they work and live in order to improve the public health.”

“Chapter Three: 'A Translator of Sorts’” is the final installment of “Observation: On HIV/AIDS,” GW faculty member Lawrence “Bopper” Deyton, MD, ’85, at the GW School of Medicine and Health Sciences, unveils a story of self-discovery. Detailing the struggles of discrimination, and the fight for social justice and equality to promote community care and awareness in Washington, D.C.
“Observations” is a new online, long-form nonfiction series covering SMHS areas of academic excellence.