Pioneers of Discovery
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When Doctor Met Activist
By Ann Finkbeiner
A profile I once wrote of John Bartlett, chief of the Division of Infectious Diseases (ID), began by confessing conflict of interest, then moved on to his exemplary career. The conflict is that we co-authored an excellent, repeatedly revised book. His exemplary career includes the identification of the anaerobe, Clostridium difficile, as the agent of antibiotic-associated colitis; and nearly unique expertise in treating all other anaerobic infections and most other infectious diseases as well, notably HIV infection.
He came to the School of Medicine in 1980 to head the ID division, and has increased its faculty by a factor of 10 and its budget by a factor of 1,000. He's written 389 articles, 255 chapters, and 13 books. Currently, he runs two public websites that offer medical education in AIDS and ID. He gets to work at 4 a.m. every day and makes an all-day pot of coffee that by 5 p.m. should have a public health warning attached; also, he occasionally reuses coffee filters. He works 100 hours a week, every week. He works so hard, he says, because he's competitive- -"it's just a driving thing with me"--and wants everything he touches to be first and best. His style in all this is unhurried, highly focused, generous. After the profile was published, concerned colleagues sent him 1,000 coffee filters.
But I've already written this profile, so how about a revealing story instead?
In 1987, the AIDS epidemic was six years old, "the time when everyone was just dying of AIDS," says Bartlett, "when almost any treatment that could be used was used. Because we were desperate." As a result, Bartlett says, "AIDS care at that time was always an us-against-them, and a lot of us's and them's. We were really struggling with the activists."
One particular struggle was over treatment of a common, lethal opportunistic pneumonia called PCP, "a terrible pneumonia," wrote activist Garey Lambert, "and the treatment was almost as bad as the disease, a debilitating 21-day hospital course of intravenous pentamidine." Lambert--later editor of the local gay newspaper, The Alternative--and other activists, with considerably more passion than knowledge, wanted doctors to prescribe pentamidine in aerosol form to be inhaled, thereby preventing PCP and debilitation. They said that some small AIDS services offered the aerosol and that it worked. Lambert told me later, "We wanted it. They weren't doing it. They weren't testing it. Harvard wasn't, Stanford wasn't, Hopkins wasn't." Lambert thought if he convinced Hopkins, and in particular Bartlett, to use aerosolized pentamidine, everyone else would use it too.
"That was my first big fight with JB, Dr. John," he said. "I remember going to his office, to that horrible little hole, stacks of stuff. I remember him tapping his glasses like he does, on the top of one of the stacks, and telling me, 'We've been trying to put stuff down people's lungs for years to get rid of pneumonia, and it doesn't work.'"
Bartlett didn't like untested treatments and didn't believe this one worth testing. Lambert and the other activists were so mad they planned to provide aerosolized pentamidine themselves. "When [Bartlett] found out we were doing our own program," Lambert said, "he decided he wasn't going to be shown up by some upstart organization--his competitive spirit was tweaked. He had Hopkins's program for aerosolized pentamidine up and running two days before we did."
The reason was, Bartlett says, the activists' program forced a decision: "I could ignore it, or I could try to close it down and all that would do was widen the gulf. Or I could set it up here under what I considered better supervision. I opted for the latter--sounded better, felt better." So Bartlett set up a small trial. Once Hopkins offered aerosolized pentamidine, Lambert wrote, things happened: "Whether Hopkins influenced the rest of medicine is hard to say, but by late spring of 1988 aerosol pentamidine was available in every major city on both coasts. By fall, it was an accepted treatment across the country. By December, the first study results showing that [it] really did prevent PCP were published. . . .We had bought nine months of PCP prevention with no data to support it, a triumph of common sense over medicine's conventions."
The triumph was less of common sense than of politics and solid medical data, but conventional medicine admitted it anyway, publicly: "[Bartlett] made very, very public statements he'd been wrong [about topical treatment]," said Lambert. "And subsequently he was gracious about it."
Impressed, Lambert said, he wrote Bartlett "a long letter; he wrote me a nice reply. I started calling him early in the morning and just talking with him, which he never seemed to mind." They talked about policy with this particularly political disease of AIDS, about how to extract funding and the best medical care from the ongoing battles between traditional medicine, activists, and the interested parties in every governing sector. "For me," said Bartlett, "[Lambert] was a medical advisory board composed of patients. He was a hidden microphone." And Lambert, noting Bartlett's regard for clinical data, began reading medical texts and going to ID case conferences.
"Activists had a lot to learn," Lambert wrote later. "We didn't know about pharmacology, peer review, publication of study results, interpretation of data, anything." After one meeting, Lambert talked to Bartlett about their old argument: "I said, 'We were 100 percent wrong in the way we went about it.' And he said, 'You were a lot more right than that. You changed the way I do business at Hopkins.'"
Explains Bartlett, "I was saying that the issue of us-and-them sort of collapsed. We were partners." By the early 1990s, the two were attending policy meetings and scientific conferences together. The tag-team approach is now standard for AIDS doctors and activists deciding policy and funding. "That's new," says Bartlett. "An awful lot of stuff goes on outside of medicine where doctors and patients need a partnership. There's no other disease in medicine where doctors and patients have worked together like this." For his part, Lambert said, AIDS "has changed the way ID faces patients. Most ID docs are much more flexible, much more responsive. This might be the first true manifestation of the essence of the doctor-patient relationship."
Garey Lambert died of AIDS in 1996. Bartlett wrote in The Alternative, "HIV can be cruel to live with and to die from. But sometimes it forces people to transcend common barriers and confront new challenges in a compressed time frame. Garey rose to the occasion."
RETURN TO APRIL 2000 TABLE OF CONTENTS.