Hopkins Medicine Magazine - Beyond the Abyss

THE WAY JOHN BARTLETT RECALLS IT NOW, he was in a real fix on that Wednesday morning in the fall of 1995. He was slated for a talk at Baltimore's private Gilman School for boys on the subject of AIDS, a scourge the renowned infectious disease expert knew with real authority. But Bartlett always liked to bring along a patient for such events, someone who could tell young students what it was like to live with the disease.

He typically relied on an AIDS sufferer who was also his best friend to perform the task, but the friend was too sick, forcing Bartlett to make hasty arrangements for a substitute. At the appointed hour—when the forlorn stand-in was getting into Bartlett's car for the ride to Gilman—the scientist suddenly felt a twinge of panic.

Good God, Bartlett thought, the only thing I know about this guy is that he's been a lifelong IV drug user. How do I know he can cogently address an auditorium filled with high school students?

“Have you ever done this before?” Bartlett asked the new volunteer as he pulled away from the Hospital.

With his concern thusly deepened, Bartlett deftly slipped into Instructor Mode: “Okay,” he said, “first, I'm going to tell these kids all about the science behind HIV….”

“No,” Russell interrupted. “We're not going to do it that way. You're going to put them to sleep. I'll go first.”

Uh oh, Bartlett thought. What have I gotten myself into this time? “Do you know what you're going to say?” Bartlett ventured, unable to fathom the source of his passenger's confidence as a public speaker.

Minutes after arriving on the leafy North Baltimore campus, Henry Russell, a slightly hunched African American man with an advanced case of AIDS, stood at the podium surveying the nearly 200 mostly white faces of the young men gathered before him and … launched. “I look out on this group of people,” Russell began, with a preternaturally booming voice, “and I see this hungry group of young men. Tell me, how many of you want to be doctors?” Russell asked, nodding at the handful of raised hands. “How many of you want to be lawyers?” More hands. “Senators?”

“Well,” continued Russell, “I used to have those kinds of dreams, too. But now I've got to tell you you're looking at a dead man.”

That was 10 years ago, and today Bartlett still can't forget how the man he came to call the “Reverend Henry Russell” held the auditorium so spellbound that the scientist never took the stage himself. At the end, the throng rose in a standing ovation for the inspiring words of a dying man trying to make the most of his remaining months to live.

Months to live. That's what Bartlett thought, too, 10 years ago. Heck, Russell was already living on borrowed time, at least by the numbers. He had been diagnosed with the beastly virus in 1987. A fusillade of AZT had already bought Russell more time than most patients got, but his number would ultimately come up. They all did. Every one of them.

“The Moore Clinic is not a clinic for the dead anymore,” Henry Russell says today. “It's a clinic for the living now.” The “Reverend” laughs easily at the big switch, and is quick to rattle off the full tally of just how much damage he must still bear, much of it the natural extension of years with the disease. Hepatitis C. Hypertension. Diabetes. Anemia. A severely damaged hip. The load of complications makes his life high-maintenance, requiring an ambitious home pharmacy typical for many of the lingering sufferers who'd been lucky enough to hold on for the powerful antiretroviral medicines that began dramatically changing the AIDS-treatment landscape in 1997. “When the word ‘undetectable' came out,” recalls Russell, “people were astonished. They started coming to the hospital and living. Your blood count is going up. You're gaining weight. Nobody was looking like skeletons anymore.”

But while those hard-won cocktail treatments have worked wonders, a secondary campaign to winnow each patient's daily pill dose while managing side effects has been gaining traction. Sustaining an AIDS patient's life once required up to 20 pills a day at mealtimes. But living longer also promoted all of the collateral diseases that the destructive virus became famous for, and turned the medication regimens into a taxing balancing act. As one clinic worker puts it, “Being an AIDS patient can become a full-time job.”

John Bartlett says that may soon change. Beginning sometime in 2006, he hopes, rival drug-makers will combine forces to create the optimal AIDS-fighting regimen: one pill, once a day. For newly infected patients responsive to treatment, that could mean their levels of virus will remain in the coveted undetectable range for the duration of a normal life span.

The Johns Hopkins AIDS-fighting machine may be just one strong player in this global drama, but it's also one of the most influential, and its crown jewel is the Moore Clinic. Here in this rudimentary 2,000 square feet of rooms on Carnegie 3, more than 3,300 of Maryland's 27,500 HIV-infected patients receive treatment from 80 providers. Over the years, the cases that have passed through this portal have laid the foundation for an authoritative database—chiefly designed by current clinic head Richard Moore—which includes painstakingly documented patient information known among HIV specialists worldwide. Its senior researchers have generated over 100 papers just from this database, with an additional 100-some papers produced independently of it by associated faculty members.

Among the most significant studies to emerge from Hopkins on the disease, according to Bartlett, was a seminal finding published in 1999 by Robert Siliciano. That study established that, once a person contracts HIV, for all practical purposes they will carry the virus for the rest of their lives, or for an average of 73 years. The finding was a dramatic challenge to earlier claims by prominent researcher David Ho that a cure might be on the near horizon.

Another key finding published in 1997 directly refuted emerging assumptions that urban poor patients were doomed to fare badly with the new antiretroviral therapies. A study chiefly authored by Moore showed that proper care and compliance protocols could level the playing field with outcomes for the wealthier patients.

But one of Bartlett's favorite pieces of research came just two years ago, under the authorship of his colleague Joel Gallant. In a 2004 JAMA article, Gallant published findings that defined the optimal pharmaceutical regimens for new HIV patients. After Gallant had presented the findings to fellow HIV experts in Barcelona the previous year, according to Bartlett, attending physicians “changed what they did when they went back to their offices.”

Such a steady flow of key research has kept Hopkins way out in front when it comes to drawing AIDS-linked funds from the National Institutes of Health, especially when the School of Medicine's government funding is combined with the School of Public Health's.

The institution's reputation for managing AIDS has also drawn a steady stream of health care pilgrims from around the world. Add to that the attachment to the Bloomberg School of Public Health, and the extent of Hopkins' approach—with operations in Africa, India and the Far East—becomes formidable. It is, however, a disease-fighting powerhouse that was built not on the Hopkins name, but on old-fashioned hard work.

When AIDS patients first began showing up at Hopkins in 1981, John Bartlett's instinct was to keep them as invisible as possible. The new mystery disease homed in on some of society's most marginalized people—gay men and users of illegal IV drugs. No one could even guarantee that health workers and other hospital patients would be protected from the deadly contagion themselves. But Bartlett considered it an article of faith that he and Hopkins had to answer the call of these unwanted patients—and then find a way to manage the risks. He also knew, though, that the hot potato in his hands was best left unadvertised.

So it was with some alarm in 1986 that he received auspicious news from Robert Heyssel, the hospital's president. Heyssel had been invited to attend grand rounds at a New York City hospital, and sought out Bartlett shortly after his return. “I got to tell you, John,” Bartlett recalls the late president telling him, “there's a virus going around and it's really awful.”

“Are you talking about AIDS?” Bartlett asked. “Bob, we've got hundreds of those patients here.”

Bartlett braced himself. He half-expected Heyssel to read him the riot act for secretly sheltering this rogue population of mortally infectious patients in his hospital, but Heyssel quickly bypassed PR concerns. The Hospital president considered it a moral imperative that Hopkins join the vanguard in fighting the new monster. “Bring me a budget,” he demanded of Bartlett. When Bartlett returned with a funding request and a game plan attached, Heyssel chided him for his modest bottom line. “Multiply it by four!” he barked.

But with Bartlett's new division formally anointed, complications quickly became manifest. Resistance appeared in the most expected ways at first, with a growing number of caregivers refusing to work with AIDS patients in their sequestered Osler unit. By then, of course, the malevolent infection was raging across the globe, striking many of the poor, along with leading figures in the arts community, and later the likes of movie stars like Rock Hudson, tennis star Arthur Ashe, basketball star Magic Johnson and even small children on the receiving end of the wrong transfusion.

Effective HIV and AIDS clinics had become the mainstay in battling the disease in nations as diverse as China and Botswana. And for many of these isolated, pill-dispensing outposts, the Moore Clinic's way of conducting business became a model.

“You're looking beautiful today, as always,” trills the latest arrival to the clinic on a Thursday morning last November. As he settles into one of the cushioned blue-fabric waiting room chairs, the jovial middle-aged man continues a familiar banter with several of the women who coordinate appointments for the steady flow of customers, all of them HIV positive, some with full-blown AIDS, most with multiple disease complications that will require staggered visits throughout the afternoon with a range of disease specialists toiling in private suites behind the counters.

Two dozen patients are in attendance today. They represent a sampling of urban patient types—mostly black, mostly male. Perhaps the only surprising aspect of the waiting room is the familial dynamics between patients and staff. Terms of endearment are liberally tossed about, peppered with small talk about each other's families—births, graduations, marriages and funerals. There's lots of talk about the future, a commodity once in short supply among the infected. The steady hum is occasionally punctuated by unselfconscious peals of laughter, a detail hard to imagine prior to the 1997 cocktails that finally broke the virus's death grip.

Meanwhile, in the cramped adjacent rooms, specialists tackle patients' complications almost in assembly-line style. Moore patients can get most of their routine medical needs answered within the clinic's walls: by neurologists, diabetes experts, gastroenterologists, even ophthalmologists and gynecologists. And in the true spirit of one-stop-shopping, psychiatrists and social workers round out the services with a network of support groups and extension clinics.

Most of the clinic's senior providers are deeply engaged in research on some aspect of the disease. Many of them work collaboratively with clinic COO Richard Moore, who has spun out a superhuman 100-plus papers on the affliction in the last 15 years. One of Moore's closest associates is nurse practitioner Jeanne Keruly, who arrived at Hopkins as a nurse in 1973 and quickly evolved into a research coordinator and highly seasoned grant writer at the clinic. “I call myself a lifer,” she says from her office suite in the 1830 Building, where she's surrounded by stacks of case files on all sides. One older foot-high stack is bundled with rubber bands, with the word “Deceased” scrawled across it in red.

Another lifer is Jo Leslie, who presides over the clinic's inpatient unit. She was among the first to take up round-the-clock residency on the AIDS wards, and remembers spending the nights there “scared to death. In the beginning,” she says, “they were dying in our arms, literally, like 10 or 12 a month.” Leslie, a sprightly Sandy Duncan look-alike with an easy smile, says lifers like her are very self-selecting, typically coming from the ranks of “bleeding- heart knee-jerk liberals and ex-hippies.”

And though some patients still die, Leslie says, they're increasingly dying from the sequelae of the AIDS condition rather than the original virus itself.

One of the clinic's most powerful emissaries in recent years is Joel Gallant, who seems to fight the monster on every front at once. When he's not steeped in trailblazing research, Gallant can be found exchanging the latest findings with other scientists around the world and then making special pilgrimages to underserved third world hot spots. He's also the general public's “go-to guy” in his capacity as Hopkins' HIV/AIDS expert on the web, a role that makes him the responder to a steady flow of questions from patients and caregivers all over the world, free of charge, 24-7.

During one recent Thursday at one of the Moore Clinic's suburban outposts, a young Brazilian patient was so excited to see Gallant that she brought along a towering stack of boxes containing sweets, wrapped in cellophane. She hugged him when he walked into the room and then quickly cut to the chase: “So, how are my labs?”

This patient has come a long way. In her file, a set of before and after photos shows the successful results of a series of “sculptra” treatments, through which her AIDS-sunken cheeks were injected with a synthetic collagen substitute to restore their youthful glow. Today she appears trim, vivacious and energetic, her long dark hair swinging with her excited hand gestures as she describes her latest beauty breakthroughs.

But there is one complication. She's now engaged, and there is a high risk that her fiancé's job will be transferred to Florida. How will she continue to get the care to which she's become so accustomed?

“Don't say no because of me,” Gallant admonishes sheepishly, explaining that top-quality HIV management can be found throughout the western countries, and especially in populous places like Florida.

Another of Gallant's favorite patients is a 75-year-old Jewish grandmother of eight, whose late husband contracted the virus years ago through a blood transfusion. She considers her condition relatively manageable, ingesting five pills in the morning, two at lunch time and five more in the evening. She also self-administers two injections per day. “Life goes on,” she says. “It's amazing.”

Even as a cure remains maddeningly beyond their grasp, Gallant and the clinic's other latter-day stars have shown a nimble ability to adapt rapidly to ever-sharpening HIV remedies. In fact, they are closing in on an optimal management scenario. Able to intercept most strains of HIV in their earliest stages, they halt the virus's ability to cripple the immune system. This can prevent opportunistic infections, allowing clinicians to focus exclusively on keeping the key virus at bay.

Melanie Reese, one of Jeanne Keruly's patients, might provide a glimpse of the optimal HIV cases now coming into the pipeline. Reese boldly and publicly attributes the HIV infection that she carries to a brutal rape that occurred in her home in 2000. Amid her slow recovery from that hellish trauma, she knew to get periodic HIV tests throughout the following year, and always came out negative.

Then, in 2002, Reese responded to a Red Cross blood drive that eventually brought a call-in for a “donor consult.” That meeting informed her that she was HIV positive. Born and raised in San Francisco, a “ground zero” for AIDS, Reese was hard-wired with the belief that contracting HIV brings a quick and miserable death. She broke out in tears. “I'm dying. I just know I'm going to die.”

This was in February of 2002, and Reese's first appointment at the Moore Clinic would take at least two months to come through. I'll be dead by then, she thought. Arriving at last in the Moore Clinic waiting room on April 19 of 2002, she surveyed the sickly looking patients and thought, I don't belong here. I don't look like these people. Still, over time Reese was won over by the earnest researchers she encountered and got swept up in wanting to become the most perfectly compliant patient. She suffered through nine hellish weeks of side effects after starting on medications, but today, she says, “I have never been symptomatic with HIV.” She now takes just two pills daily to keep her virus in check. The most worrisome threat to her longevity now, Keruly says, is an asthma condition, not her HIV.

These days, as John Bartlett looks back on his career-long campaign against AIDS, he can't help but remember pivotal moments in the exhausting struggle. He talks about the low point, when the body count mounted so inexorably that a small cottage industry arose through which AIDS patients could sell their life insurance policies. “They just packed their bags and got ready,” says Bartlett.

Then he thinks back to 1997, when the pharmaceutical companies finally started hitting closer to the bull's eye. Morbidity rates plummeted by 70 percent. Clinic workers hard-wired for cynicism hardly knew what hit them. Even veteran sufferers like Henry Russell started making life plans again.