Epicenter of an Epidemic
Date: February 1, 2013
When John Bartlett sat down that day in 1982 for one of his regular Saturday morning meetings with Hopkins colleague Frank Polk, the infectious disease specialist didn’t see any pandemics on the horizon. So he was shocked to hear Polk announce plans to switch gears mid-career and turn his focus to tracking the epidemiology of an obscure and mysterious ailment called gay-related immunodeficiency disease (GRID).
“I told him he was making a mistake,” Bartlett recalls today. “He was doing important work on infectious disease complications in pregnancy. He was well-established, well-funded, and here he was walking away from that for a disease that had killed maybe seven people up to that point.”
Polk stood firm and made a prediction Bartlett has never forgotten: “This is going to be a big one.” That September, the Centers for Disease Control dropped the GRID name in favor of a new moniker that more accurately described the disease—acquired immunodeficiency syndrome.
Since then, AIDS has killed 30 million people around the world.
Three decades ago, the emergence of the human immunodeficiency virus (HIV) that causes AIDS rocked the world of medicine. The virus erupted at a time when a number of experts regarded infectious disease as in decline, beaten back by decades of research and clinical advances in virology and epidemiology. The new virus trumped those notions, taking hold with deadly efficiency on the secretive margins of society, spreading primarily among homosexuals and intravenous drug users.
“Most young physicians today, even those working on AIDS, have no idea how rich the history of this infection is,” Bartlett says. “They have this vague sort of notion that there was a period early on when we couldn’t do much for patients, but that’s about the extent of it.”
Through the 1980s and into the 1990s, the nation and the world were gripped by fear of HIV and AIDS. Early on, there were worries about transmission through the likes of mosquito bites and toilet seats and coughing. No one knew at first whether and how much the blood supply might be at risk. Isolated but confirmed reports of transmission during surgeries and dental work sparked something close to an all-out panic.
Hopkins Hospital landed at the center of several such controversies. In one early case, a nurse was suspended from her job after refusing to scrub for surgery on a patient infected with HIV. In 1987, the hospital landed in the headlines when former house fellow Hacib Aoun sued over issues related to confidentiality rules in the aftermath of the accidental needle stick that had given him HIV virus three years earlier. (Aoun would die of AIDS in 1992.)
When the 1987 autopsy of a woman accidentally shot by a crossbow arrow showed she was HIV-positive, the Hospital came under sharp criticism for hewing to confidentiality rules that made no notification to rescue workers who had tried to save the woman at the blood-soaked scene of the incident.
The most sensational of these cases involved the 1990 death from AIDS of breast cancer surgeon Rudolph Almaraz, which sparked an effort by the hospital to administer free HIV tests to some 1,800 former patients. In the one case that came up positive, Bartlett himself had to deliver the news.
“She threw a chair at me on Meyer 4,” he recalls, with a shake of his head. “Those days were truly something else.”
As chief of a newly established Division of Infectious Diseases, Bartlett made the call to open an AIDS clinic in 1983. It was only the second such facility in the country. While that’s something that Hopkins takes pride in today, Bartlett and his colleagues kept the true mission of the Moore Clinic a secret at the time—not just from a fearful general public but from hospital administrators as well.
“We just called it an infectious disease clinic and left it at that,” Bartlett says. “We basically didn’t tell anybody what we were really doing. That’s just the way things had to be at the time.”
The patient population at Moore fed Polk’s groundbreaking work on the epidemiology of HIV. He launched a pair of studies looking prospectively at at-risk populations. Both the Multicenter AIDS Cohort Study (MACS), which focused on homosexuals, and the AIDS Link to Intravenous Drug Experience (ALIVE) study remain active today—25 years after Polk’s death from a brain tumor at age 46 in 1988. The MACS study alone has generated more than 1,000 scientific papers, Bartlett says.
Gynecologist Jean Anderson arrived at Hopkins in the late 1980s and soon joined the all-female team that served women AIDS patients at the Moore Clinic. The service would eventually evolve under her leadership into the HIV Women’s Health Program. There were few female patients in the early days, but today women account for nearly one-third of HIV infections.
“What I remember most is just the patients dying, one after another, every one of them just gone,” she says. “The weekly meeting of the AIDS service was basically a reading of a death list: ‘So-and-so died. So-and-so died. So-and-so is about to die.’ It just went on and on.” She recalls the experience as something akin to wartime trauma endured by combat soldiers.
“If someone asked you how you would most hate to die, that’s what was happening to these people,” Bartlett says. “They were dying in disgrace, people hating them, their families abandoning them. And in the midst of all that, the disease was making them lose their minds.”
Tears come to Anderson’s eyes as she recalls one patient who showed up to hear a presentation on AIDS that Anderson gave at the School of Public Health. Afterward, the woman congratulated her. “That was a really good talk,” she said. “But there is one thing that you don’t understand: Having HIV is not my worst problem.”
“So many patients were caught up in addiction, poverty, violence,” Anderson says. “These were poor and often uneducated women who had so little in their lives. But so many of them dealt with dying with enormous courage and dignity. It was inspiring.”
For a decade, clinicians were basically helpless in the battle against AIDS. By necessity, they focused on delivering comfort care at end of life, a turn of events that would help spark the modern-day hospice movement. Both Bartlett and Anderson marvel at the clinical professionals who decided early on to dedicate themselves to caring for dying patients regarded by much of society as dangerous outcasts.
“At the time, the AIDS service had one of the lowest employee attrition rates in the hospital,” Anderson says. “That just speaks to the intensity and commitment of a lot of amazing people.”
Bartlett, too, marvels over the esprit de corps among AIDS staffers in those days. “Medicine at that time was different,” he says. “We worked hard together, but we also played hard together.” On display in his office is a championship trophy awarded to the “AIDS Busters” after they won the 1989 Hopkins softball league title. “I tell people these days about how we had a softball team, and they just look at me, like, ‘What the heck are you talking about?’”
In 1986, Hospital President Robert Heysell called Bartlett into his office and said that it was time for Hopkins and its Division of Infectious Diseases to focus on AIDS. Bartlett broke the news to him about the Moore Clinic and Polk’s research.
As Bartlett recalls it, the conversation went like this:
“Bob said, ‘You have an AIDS clinic—where?’”
“I said, ‘Well, it’s in the basement.’”
“And he said, ‘OK, well in that case I think you need a hospital ward, too.’”
Bartlett submitted a proposal to start such a ward. Heysell endorsed the overall plan but rejected the proposed funding level—and instead gave the project three times the budget Bartlett had asked for. Soon, Hopkins Hospital had the third AIDS ward in the country.
The first glimmer of hope arrived 1987, with the approval of the antiretroviral AZT as a therapy. The drug had brutal side effects and extended patient life spans by only six months or so. But it demonstrated for the first time that treatment could make a difference. (Seven years later, AZT would turn out to be an invaluable tool in preventing perinatal transmission of HIV by pregnant women.)
In 1996, Bartlett traveled to Vancouver for the annual International AIDS Conference. There, researchers reported for the first time that highly active antiretroviral therapy (HAART) sharply decreased the risk that HIV-positive patients would develop AIDS. In a recent interview with the Center for Global Health Policy, Bartlett called it “the most dramatic conference in the history of AIDS.”
“You went into the conference knowing that everyone who had AIDS was going to die, and you came out knowing that everyone was going to live,” he says. “And that just doesn’t happen in medicine.”
Throughout this period, Bartlett served as co-chair of the national committee charged by the CDC with developing and refining treatment guidelines for HIV-infected patients. Both he and Anderson continue to work with AIDS patients today. An estimated 34 million people worldwide are infected with the HIV virus, so there remains much work ahead in reversing the course of the pandemic.
Looking back three decades to those desperate early days, Anderson says, “I come from a family with a lot of Christian preachers, and to me the work we were doing was spiritual work,” she says. “I’d look at the people we were serving, and I just felt, by God, this is what Jesus would be doing if he were here.” *