Grinding Task : Researcher at Front Line in AIDS War
“If I have seen further,” Sir Isaac Newton, the great 17th-Century physicist, once said, “it is by standing upon the shoulders of giants.”
When the history of the scourge known as AIDS is finally written, perhaps in the 21st Century, Dr. Robert T. Schooley does not expect his name to be numbered among the giants on whose shoulders the conquerors of the dread disease stood. At best, he says, his research may find a place among the footnotes.
Yet, in the collective world of late 20th-Century medical science, researchers such as Schooley play an indispensable role.
“I don’t think that in the year 2055 someone will pull out an encyclopedia, look up AIDS and find the names of most of the people doing the work now,” he said recently. “When you look at polio, you only see Jonas Salk and Albert Sabin. You don’t see the several hundred others who were also doing research. Yet Salk and Sabin couldn’t have done what they did without the work of those several hundred other people.
“I don’t have any illusions about being remembered as the person who cured AIDS. I want to be remembered as one of the people who contributed.”
‘A Microcosm of Life’
Since 1982, Schooley, a specialist in infectious diseases at Massachusetts General Hospital, has been engaged in AIDS research. His work has taken place both in the laboratory, where he is studying the body’s immune response to the AIDS virus, and in patients such as Jeff Mullican, an early participant in the national study of AZT, the only drug thus far licensed to treat the deadly disease.
“In a sense, research is just a microcosm of life,” said the 37-year-old Schooley, known as Chip. “When people think about experiments in science, they think of them as being different from life--but everything you do is an experiment. It’s really just the same activity being carried out a little bit more methodically, that’s all.”
Massachusetts General Hospital encountered its first AIDS patient in 1980, at least a year before the disease was identified as a new medical malady and given a name, acquired immune deficiency syndrome. The patient, a young homosexual, had Kaposi’s sarcoma, a capillary cancer extremely rare in that age group. Since that time, AIDS--which destroys the body’s immune system, leaving it vulnerable to otherwise rare infections and cancers--has struck more than 35,000 Americans, killing more than 20,000 of them.
The majority of cases in this country thus far have occurred among gay or bisexual men, intravenous drug users and their sexual partners--but AIDS can afflict men, women and children, regardless of their sexual orientation. It is commonly spread through anal and vaginal intercourse, through the sharing of unsterilized hypodermic needles, and by infected women to fetuses during pregnancy.
For Schooley, who chose to specialize in infectious diseases because “you can give people a drug, they get better and go home,” the onset of this virulent new epidemic represented a major turning point in his own medical career.
“I’m in it for the long haul,” he said. “I hope there is no long haul, but I wouldn’t be a realist if I thought it was going to be over quickly. I think we will make progress in a wide variety of areas with increasing speed--but I think AIDS is going to be a big problem for a while.”
A Grinding Struggle
As it plays out in his own life, the battle against AIDS has become a grinding, almost prosaic struggle to find enough hours--an ordeal all too common throughout American life. What sets Schooley apart, however, what interjects an undercurrent of urgency he can never quite escape, is the fact that his job lies at the front lines of a life-or-death campaign against a disease that threatens to kill literally every single person it infects.
Schooley is an assistant professor of medicine at Harvard University, for which Massachusetts General is a primary teaching hospital. Like any member of a large, inevitably bureaucratic organization, he must devote many hours each week at hospital committee meetings and similar institutional duties.
The bulk of Schooley’s income comes from grants, most from the federal government, in support of his research. Drafting proposals, winning the grants and dealing with the red tape they entail are his responsibility too.
As a senior researcher, he frequently travels out of town to deliver talks and attend major scientific conferences. Such things are necessary if he is to cultivate professional contacts, stay current with what others in the field are doing and maintain his own stature within the AIDS scientific network.
Where AIDS is concerned, Schooley is also a public advocate. He works with a variety of public and private groups to provide accurate information about the disease and regularly speaks against misinformation, discriminatory attitudes and what he considers unnecessary public anxieties about AIDS patients.
Job vs. Family Needs
All this is in addition to his basic responsibilities for meeting the needs of his patients, supervising his lab, writing scientific papers and fulfilling the multiple demands associated with conducting human drug studies on AIDS patients--such as the AZT trial.
And there is the pull-and-tug between his job and the needs of his family. His wife, Pam, also 37, a graduate student in landscape architecture, is in the process of building a career of her own. And they have two daughters, Kim 13, and Beth, 10.
During one recent high-pressure week, Schooley rose before 5 a.m. on four successive mornings because there was no other time to finish writing a book chapter he had promised for a hospital colleague compiling a medical text.
Early in his career, when he was a medical student at Johns Hopkins School of Medicine and during his post-medical school years, Schooley performed lab work himself under the direction of the lead scientists who conceived and headed projects.
Today, he is the scientist who initiates and leads, guiding a team of post-doctoral fellows through long days in the lab, sessions that often stretch into 10 or 11 hours. When Schooley travels, he often stays in touch by telephone.
Experimental Method
The specific details of the scientific work that goes on in Schooley’s lab--and in all the other AIDS labs all over the country--are extremely abstruse and obscure to the layman.
But his approach is that of any experimental scientist: He asks a question about a particular facet of the deadly disease; develops a hypothetical answer; runs a series of carefully controlled tests to determine whether the answer holds true in practice, and publishes his results. Just as the questions he explores and the methods he uses rest on the foundation laid by hundreds of other researchers doing similar experiments, so will his observations guide those who follow him.
“With my schedule and the other demands on my time, I can’t go into the lab and spend the day pipetting,” he said, referring to a pipette, a straw-like glass tube used to move fluids, in this case mixing the AIDS virus with antiviral drugs and cells.
“I do spend a lot of time thinking about and going over the lab results with my fellows--but I physically don’t spend a lot of time at the hood, where we do the work,” he added. “I bring them back the cells (from AIDS patients), and they separate the cells, put them into tissue culture and do the actual experiments.”
He feels he can be more effective by “creating an environment in which the fellows can carry out the experiments without all the distractions that I’m subjected to, and can have the projects they truly see as their own. My role, really, is to go over their ideas with them.”
4-Year Study Published
In a paper presented at a recent major scientific meeting, Schooley and his post-doctoral fellows, including Dr. Bruce Walker, reported the results of a four-year project studying the way the body’s immune system responds to an invasion by the AIDS virus. They concluded that there are certain T-cells--a component of the body’s immune system--that attack other cells in the body that are infected by the AIDS virus. They found, however, that this so-called “cytotoxic” response differs in magnitude from one infected individual to another.
“We don’t know yet whether the differing responses have any correlation with how people do with this disease,” Schooley said. “We need to find out whether this has some predictive value in terms of how people do with the virus--and whether it matters. Is having more cytotoxic activity good for you, or is it not? If more is good, is there a way to influence people so that you can increase that activity?”
He added: “Also, in evaluating vaccines, it’s going to be important to know whether there is a cellular response, as well as an antibody response, to vaccines that are tried.”
Next, he said, his research team hopes to determine through a series of experiments exactly how this response is induced, an approach he hopes may have some practical application in preventing individuals who are infected from getting sick.
“We hope that by learning more about the normal attempts of the host to fend the virus off, we can learn how to manipulate it,” Schooley said. “In doing so, maybe we can help people to do better with the virus than they otherwise would do.”
One of Schooley’s most gratifying projects thus far has been his participation in the nationwide, multi-center study of AZT, or azidothymidine, which in March became the first AIDS treatment drug approved for marketing in this country. The study showed, in only a few months, that the drug had a dramatic impact in prolonging the lives of AIDS patients and minimizing the frequency and severity of their infections.
When experimental AIDS vaccines are ready for human trials, he expects to participate in those, and he also hopes to continue his work with other AIDS drugs. The encouraging results of the AZT program have given scientists reason to be optimistic that even more effective and less toxic drugs to fight AIDS may be forthcoming.
It was not only the AZT study’s positive outcome that provided Schooley with an enormous degree of satisfaction, but the fact that clinical studies--that is, studies involving humans--in and of themselves have given him the opportunity to combine essential AIDS research activities with patient care. It is an aspect of medicine that has always meant a great deal to him.
“I probably should spend more of my time doing the basic lab research, since that’s where my funding is coming from,” he said. “But I enjoy the clinical work, and it helps me focus my research activities--I think it makes the research better. Caring for patients is very important to me. I don’t see that changing. One of the reasons I have an MD is because I want to be a medical doctor.”
Enjoys Working With Patients
He added: “I want to keep doing the antiviral studies and seeing patients in that context. I can’t be a full-time AIDS clinician--I wouldn’t have time to do anything else. But I enjoy the patient interaction. It’s harder to cut down on that than on any other things.”
Indeed, AIDS patients such as Jeff Mullican have been helped in several ways from Schooley’s involvement. When Mullican showed up in April, 1986, in the Mass General emergency room with his initial bout of pneumocystis carinii pneumonia--and his AIDS was first diagnosed--Schooley, known to be enrolling AIDS patients in the new AZT study, was called in immediately. Right away, he offered Mullican a place in the experiment.
Mullican was extremely fortunate. In the gamble of double-blind, placebo-controlled studies--where half the patients receive medically worthless sugar pills as a control and no one knows who is getting what--Mullican was on the drug right from the start.
Since then, he has more than outlived the average life span of AIDS patients with pneumocystis , a respiratory infection caused by a parasite. Such patients typically survive no longer than 35 to 40 weeks--and Mullican is still alive after more than 50 weeks.
Although Mullican served as a research subject, a medical pioneer in the effort against AIDS, he has also had the benefit of Schooley’s medical care and expertise.
Struggled to Breathe
“I may be part of a research study, but I’m also his patient,” Mullican said. “And he makes me feel like a patient whose outcome he cares about.”
Recently, Mullican recovered from his third episode of pneumocystis . It was disconcerting during its worst moments to see him struggle for air after only a short walk of several feet from his kitchen to a living room chair.
“The extra amount of oxygen you need for that little bit of exercise just can’t be extracted by the lungs,” Schooley said. “You just de-saturate the blood of oxygen. I have a little asthma and hay fever in the spring--just feeling that tightness in your chest is scary. That’s what this is all about.”
Still, like Mullican’s other bouts--and compared to those suffered by more seriously ill AIDS patients--this episode was fairly mild. Mullican was not hospitalized; in fact, he flew to Washington to spend the Easter holidays with his family. And the pneumonia was treated with a drug he could take orally.
“He has fair insight as to when these bouts are coming on and he comes in early,” Schooley said. “Whether he has a stronger immune response than other AIDS patients, or whether it’s the AZT--we don’t know. He’s been lucky at this point. I’m certainly happy about that.”
‘Seeing Good Things Happen’
The satisfaction Schooley experiences from his work often derives “from seeing good things happen” with patients such as Mullican. “I enjoy it when I make a decision that helps him medically get over a problem,” he said. “I enjoy it when he tells me about something he’s done that he wanted to do--and was able to do it because of something I did for him medically.
“Part of the reason Jeff is doing as well as he is is because of the AZT study,” Schooley continued. “I hope there will be many more people like him who will benefit from the work that is going on.”
Yet, for every encouraging story such as Mullican’s, there can also be disappointment.
Recently, Schooley lost an AIDS patient, a 38-year-old gay man, also a participant in the AZT study. Like Mullican, he was suffering his third bout of pneumocystis. Unlike Mullican, however, he was extremely ill--and had been right from the start.
Severe Illness
“His first bout was quite severe,” Schooley said. “He arrived in a much more advanced state than Jeff did. He’d been sicker for a long time.”
The patient was hospitalized several weeks ago and “intubated,” that is, a tube was inserted into his throat to help him breathe, and attached to a respirator, a device that pumps high concentrations of oxygen directly into the lungs.
Before he was intubated, however, several of the doctors debated whether it was appropriate to undertake the procedure since they did not expect him to survive.
“The house staff had a lot of concern about intubating someone who was probably going to die,” Schooley said. “There are hospitals who say: ‘We don’t intubate AIDS patients.’ I told them they were right--that he probably would die. But we didn’t know for sure that he would die. Some patients get better and go home. I felt it wasn’t fair not to give him the chance to get better.
‘Really Wanted to Fight’
“He knew it was a grave situation, but said he really wanted to fight,” Schooley said. “I asked him if he wanted us to intubate him if he got so sick that he couldn’t get enough oxygen with a mask. He looked at me and said: ‘Absolutely--the alternative is to die, isn’t it? I want to live.’ ”
“We need to make sure that AIDS doesn’t become an excuse to change the way we practice medicine in the United States,” Schooley added. “One of the things that makes medicine both a compassionate field and one that is gratifying to be in is that we still, in American medicine, have the latitude to make decisions that are best for each individual patient.
“Taking care of AIDS patients should be like taking care of any other patients--you don’t throw out the window all the principles you’ve learned over the last 15 years just because the disease is new.”
He paused. “In him, we failed ultimately . . . but I feel very strongly that it was important to try.”
Schooley’s interest in medicine began when he was in the third or fourth grade. “I was stimulated by what I liked seeing my pediatrician, Dr. William Crittenden, do,” he said. “I could see he really enjoyed what he was doing. I was petrified of his nurse, though. He had her do the injecting. He was the one with the smiles.”
Schooley, a native of Washington, grew up in Birmingham, Ala. When he was in the fifth grade, he wrote in a school paper that he wanted to become a pediatrician. There were no physicians in his family--his father sold railroad cars for a living--but his family was pleased.
He was 16 when he began his first year at college at Washington & Lee University in Lexington, Va. His was not a successful first year. “I drifted quite a bit and had a mediocre record,” he said. “I did well in sciences, but clearly didn’t distinguish myself.”
His college career turned around at the end of that first year, after his chemistry professor--also his adviser--invited him to join a research project in organic chemistry. Schooley worked for him one afternoon a week. “The idea was not to try to do earth-shattering front-line research, but to give students an opportunity to see what research would be like,” Schooley said.
Inspirational Professor
The professor, a gentle man named Keith Shillington who demonstrated a deep interest in his students, also held small gatherings at his home on Friday and Sunday nights, to which he invited students and faculty.
“It would be faculty you wouldn’t ordinarily be exposed to, like the music teacher, or the president of the university,” Schooley said. “I was exposed to art and music, and got much more excited about what I was doing. And my grades began to improve.”
Every week, the students would arrive several hours before the meal and help Shillington cook and serve it. Then they would help him clean up afterward.
“He had an apartment about 10 feet by 12 feet, and he’d serve 15 people in that room,” Schooley said. “He had no stove. The apartment was attached to a larger house and the woman who lived there let him use her oven. The rest of the time he used a toaster oven. His bathroom served as his kitchen. We washed dishes in the bathtub.”
Summer Work in Research
At the end of his junior year, Schooley began to think about medical school, but felt he needed more practical experience. “One day my father was playing golf and met a new faculty member at the University of Alabama who’d just come from Harvard,” Schooley said. “He told him about me, and he made a phone call to the chairman of medicine at Beth Israel Hospital (in Boston). He asked if he wanted a student to come up for the summer. That was the first of four summers I spent at Beth Israel.”
There, working for a researcher in the gastrointestinal unit, he studied the transport of potassium in the small intestines of rabbits. “I enjoyed the fact that new information was being generated,” he said. “In some sense, you were doing things that had never been done before--seeing whether you were right or wrong. You were testing yourself.”
He was graduated from Johns Hopkins School of Medicine in Baltimore in 1974. After his first year at Hopkins, he met his future wife at a “gross-out” party, held to celebrate the end of a course in gross anatomy. They were married the following year.
During medical school, it became clear to Schooley that he would choose infectious diseases as his specialty. “I liked the treatability of infectious diseases,” he said. “And I liked the fact that infections involved every organ system and there was a lot of variability in what you saw.”
He served his internship and residency at Hopkins from 1974 through 1976. In 1976, he began a three-year stint at the federal government’s National Institutes of Health in Bethesda, Md., specializing in virology, specifically the Epstein-Barr virus and its relationship to mononucleosis. He moved to Harvard and Massachusetts General Hospital in 1979, expecting to continue his research on the Epstein-Barr virus.
Then AIDS came along.
A Frightening Disease
It was a frightening disease then, especially so for physicians who were trying to treat it. In those days, no one knew what was causing the deadly ailment, or how great the risks were. One Los Angeles physician, for example, recalls that in the beginning he used to hold his breath every time he examined someone with AIDS.
Like most people at that time, the members of Schooley’s family were extremely nervous. They worried about him, and they also worried about themselves.
“They were concerned that I’d pick up the disease they’d read about and heard about that was killing people,” he said. “I reassured them that I didn’t think it was a problem--that if I thought I’d be putting them at risk, I wouldn’t be doing what I was doing.
“Occasionally Beth would say: ‘Daddy, I don’t want you to get AIDS.’ I just told her that it wasn’t a disease I’d get from taking care of patients--that it was a bad disease to get, and it was important to learn how to make people better, but that you didn’t learn that by not working on it. They’re much more relaxed about it now. Kim went on rounds with me recently, and saw some AIDS patients.”
He added: “At a gut level, you had to have concerns about it. But it was clear very early on, if you looked at the epidemiology, that it couldn’t be highly contagious. It became a matter of making your intellect take control of your anxiety.”
Major Study of Risk
Schooley, in collaboration with his colleague, Dr. Martin Hirsch, authored the first major study demonstrating that health care workers faced little risk of infection from treating AIDS patients. In January, 1985, in an article published in the prestigious New England Journal of Medicine, they reported that none of 85 people accidentally exposed to the fluids of AIDS patients--including 33 people who suffered inadvertent “needle-stick” injuries--developed antibodies to the AIDS virus, meaning they had not become infected.
Despite this solid body of evidence, including his own research, Schooley still experiences some anxious moments every time he undergoes the AIDS antibody test. He is tested every six months, not because he treats AIDS patients, but because he works with the virus in the lab.
His tests have all been negative.
“Intellectually, you know the test will be negative, but you always have this anxiety that you--out of a hundred million people--will somehow pick up the virus,” he said. “It’s a lot like back when I was 10 or 11 years old and had my blood drawn by Dr. Crittenden’s nurse. I was always sure they would call me back the next day and tell me I had leukemia.”
He laughed. “It’s not something that, on an intellectual level, you worry about. But we’re all humans. If you transfer the same level of anxiety to everything you do, you probably would be afraid to drive to work in the morning, or fly.
“This is something that is new. When new things enter the equation, people tend to weigh them out of proportion to other risks.”
Schooley, who initially expected to spend two years at Massachusetts General, intends to remain there for the time being. His wife has two more years of graduate school, and he is deeply involved in his AIDS research.
Recently, he was approached by officials at a drug company interested in hiring him. He discouraged them.
“I think there are a lot of ways you can contribute working in the pharmaceutical industry and I think there are a lot of people who do,” he said. “But for me, right now would not be the optimal time. If I did something like that, I wouldn’t be involved in patient care, I couldn’t continue my immunological research, and I couldn’t interact with younger physicians and house staff.”
Noting the obvious financial advantages of such a move, however, he added: “Sure I could make a lot more money, but I could make a lot more money doing a lot of things. If I wanted to make a lot more money, I wouldn’t have gone to medical school.”
He paused. “I’m going to just keep doing what I’m doing for now,” he said.
