Fateful Odyssey : AIDS Victim Pins Hopes on Drug Test

At first, the high-pitched alarm cutting through the blackness at 2 a.m. would jolt him out of deep sleep. Now, Jeff Mullican wakes up automatically, seconds before the clock goes off.

A glass of water and a bottle of white capsules are waiting on a mantel shelf above the bed. He swallows one and tries to go back to sleep. Four hours later, at 6 a.m., a second alarm goes off and he repeats the brief ritual.

Oddly, Mullican does not know what, if anything, the capsules contain. Yet he takes them faithfully, every four hours without fail.

There is no impulse to be careless because the 32-year-old trade association executive has just embarked upon a fateful odyssey:

Mullican, who has AIDS, is participating in the first clinical trials of a promising new drug. Thus the capsules probably represent Mullican’s only chance against a so far invariably fatal disease. Yet it is a chance hedged round with brutal uncertainties.

To assure the scientific integrity of the trials, they are organized as “double-blind” tests: Neither the doctors who administer them nor the patients themselves know which of the subjects are receiving a new drug and which are receiving a look-alike placebo capsule containing nothing but sugar.

As a result, Mullican’s chances of survival hinge not only on the question of whether the new drug--azidothymidine, or AZT--will prove effective against AIDS, but also on the question of whether the bottle of capsules assigned to Patient No. 1012 contains AZT or the useless placebo.

‘The Only Bright Spot’

“Each day I hear the statistics and they terrify me,” Mullican said. “At night, when I turn the light off, that’s when I start thinking about things, that there is very little out there to cause me to hope. This drug, yes, but that’s the only bright spot on the horizon.”

About 3,000 AIDS patients--out of more than 23,000 who have been afflicted by the disease--are participating in clinical trials at medical centers across the country. Half a dozen drugs are being tested. The federal government recently announced that it would enroll an additional 1,000 patients within the next six months in new programs and release $100 million over the next five years in a further expansion of its own involvement in experimental AIDS treatment.

Within five years, experts predict, a staggering 270,000 Americans will have been struck by AIDS. Unless one of the clinical trials, or some other development, yields a breakthrough, virtually all will die within five years of diagnosis.

The word “AIDS” was never spoken on the day Mullican, a good-humored, still-vigorous, six-foot skiing addict, first met Dr. Robert T. Schooley, the 36-year-old Harvard researcher with a gently bantering manner who is administering the tests in which Mullican is involved.

Mullican had been sick for several weeks, starting with a sore throat that he first thought must be a cold, or perhaps flu. Then his fever rose and he began to have drenching night sweats. A bad taste developed in his mouth. His chest became severely congested.

His personal physician took a chest X-ray and, suspecting pneumonia, sent him to the hospital.

On the afternoon of April 11, Mullican waited nervously in one of the small private cubicles that make up the emergency room of Massachusetts General Hospital, preparing to undergo an uncomfortable diagnostic procedure known as a bronchoscopy.

Chose Words Carefully

Schooley, known to his friends as Chip, had received a call earlier from Mullican’s doctor. Stepping into the room where Mullican waited, he introduced himself and chose his words carefully: “It looks like it might be Pneumocystis carinii pneumonia,” Schooley said.

Mullican, who is gay, went numb. He knew what that meant.

Pneumocystis carinii pneumonia, or PCP, is an infection caused by a parasite that many people encounter. Those with healthy immune systems can keep the organism under control. AIDS patients cannot.

“What do you do when your world comes crashing down around you?” Mullican said later, recalling the moment. “I felt my life was over.”

Offers Reassurance

Even before the diagnosis was confirmed, Schooley sought to reassure him. He told Mullican of a study he was about to begin of AIDS patients with pneumocystis and said he was sure Mullican would qualify. There was a new drug that looked very promising. Scientists were excited about it and eager to test it on humans.

“One of the things that is true of Jeff and of many patients is that they’ve been dreading getting AIDS--and living in terror that once they got it, they’d be dead,” Schooley said. “I think it is important for them to know early on that there are things we are working on that we can offer them. There is much more to be hopeful for now than there was a year ago.”

Recognizing that Mullican needed time to adjust to the news that he had AIDS, however, Schooley did not immediately press him about joining the experiment.

Mullican, who grew up near Washington, moved to Boston two years ago after living in Boise, Ida., Denver and Seattle. He earns $40,000 a year and lives in an apartment on the ground floor of a three-story Victorian house in Boston’s South End, a neighborhood that is home to many of this city’s gays. He jokingly calls himself a “guppie” (the “g” stands for “gay”), and his apartment reflects the acronym: an expensive stereo, an Oriental rug under a glass-topped coffee table, tasteful art prints on the walls.

Sporadic Social Life

A close personal relationship of three years ended in 1983, and Mullican’s social life has been sporadic since then. Fearing AIDS, he said that for several years he has been following all the recommended precautions for sexual encounters. He has no idea how or when he might have been exposed. Recently, he said, he contacted his former lover to tell him he had AIDS. Mullican’s friend, who has no symptoms of the disease, decided to take the AIDS antibody test to see if he too was infected. The test indicated that he was.

Mullican never believed that he would get AIDS. On some level, he may not fully believe it yet.

There is an air of cockiness about him--and he is often combative when he speaks about the disease. Many in the medical community believe, although it is undocumented, that AIDS patients seem to do better and survive longer with such an attitude.

“I fully intend to survive this thing,” Mullican said. “I see no reason why I should roll over and let this disease defeat me. I’ll be damned if I’m going to let this disease beat me.”

Schooley describes Mullican as being “very much in the fighting phase” at this time.

“He’s in an ‘I’m-going-to-beat-this-thing denial’ ” Schooley said recently. “I think that’s fine. Whatever mechanism works to get him through this is fine. He knows he has a bad disease that can kill him. But his intention is for this not to happen.”

Determined as he is, Mullican cannot blink away the grimness of his situation, particularly on days when a member of his AIDS self-help group has a bad episode.

‘One Day at a Time’

“I take it one day at a time” he said. “It’s up and down. Some days, I can’t help it--I feel very melancholy. Despite my positive attitude, deep down inside, I’m terrified.”

When Mullican speaks of being afraid, it is not of death. What frightens him, he says, is the process of dying.

“I am not afraid of death,” he said. “I’m rather curious about the other side. What I’m afraid of is being a vegetable--of going from what I am now, vital and healthy, to an emaciated shadow. I’ve always been independent and self-sufficient. The idea of having to ask somebody to do something scares the hell out of me.” One of six children, Mullican lost an older brother to kidney disease 12 years ago and has never shaken the memory of his death.

“My mother had donated a kidney, but he rejected it,” Mullican said. “They were going to do another transplant and I was going to donate the kidney. But he died the day before the operation. I remember looking at him in his casket. When he died, he looked like a walking skeleton.”

Mullican insists that the quality of his life matters more to him than simply being alive.

“I will say this from the very beginning,” he said. “I do not want to be artificially kept alive. If I am to die, I am to die.”

Asked About Euthanasia

And he did say it at the very beginning. Schooley remembers that during their first encounter in the emergency room--when it appeared that Mullican did have AIDS--”Jeff asked right away about euthanasia.”

“He feels very strongly that he doesn’t want any heroic measures taken. And he has that right,” Schooley said.

Before coming to Boston, Schooley spent three years at the federal government’s National Institutes of Health in Bethesda, Md. There, while specializing in virology, he met Dr. Samuel Broder, the National Cancer Institute scientist who was to perform the first studies on AZT in both the laboratory and in humans.

A native of Birmingham, Ala., Schooley was graduated from the Johns Hopkins School of Medicine in Baltimore in 1974 and practiced there before going to NIH. He moved to Harvard and Massachusetts General in 1979.

Today, he lives in Hingham, a Boston suburb 45 minutes from the hospital by car, or 30 minutes by commuter boat across the harbor--his usual means of travel. “I can mellow out on the trip home, instead of gritting my teeth,” he said. His wife is a graduate student in landscape architecture. He has two young daughters, one dog, four fish and three guinea pigs he adopted after an NIH lab mix-up.

“One from Strain 7 somehow got in with Strain 9 and had an unauthorized litter,” he said, laughing. “Since they were not headed for research, I took them home as a humanitarian gesture. They coo at you and eat cabbage.”

Schooley came to New England expecting to complete a year of clinical training and follow it with another year of research. Then he planned to look elsewhere for a faculty job. That was before AIDS.

New Disease Appears

In 1981 a mysterious new infectious disease appeared, stunning in its ferocity and unlike anything Schooley or other specialists had ever seen. It crippled the immune system and made its victims vulnerable to ravaging “opportunistic” infections, rare cancers and severe neurological disorders. It was given the name acquired immune deficiency syndrome.

Professionally, the clinical trial at Mass General, as the hospital is commonly called, offers Schooley a role in the war against a savage and perplexing disease, even the possibility of helping to end the medical scourge of the 1980s.

There is more to it than that, however.

When AIDS patients began showing up at Mass General, Schooley suddenly found himself struggling with a whole new set of dilemmas involving his approach to patient care and his reaction to treating extremely sick people who died no matter what he did.

“Many of us went into infectious diseases because you can give people a drug, they get better and go home,” Schooley said recently. “It’s very hard to see people your own age with a fatal disease. The people who have this disease are very warm, sensitive people your own age. It’s very easy to identify with them.

“I asked this pediatric oncologist I know how he could do his work, year after year, treating kids with cancer,” Schooley remembered. “He said, ‘I’m not the reason they’re dying. I do my best to keep them alive and I can feel good about that.’ It doesn’t make you less sad when somebody you care about dies, but you can’t internalize and blame yourself.”

‘Maximize the Good Time’

In that spirit, Schooley said, “you have to give them everything you can. You have to maximize the good time they have--but recognize that there are limitations to what you can do.” He makes no attempt to distance himself, however. “If you don’t get attached to patients, you shouldn’t be in patient care,” he said.

The clinical trial that he and Mullican are involved in is scheduled to last 32 weeks. As in all clinical trials, there are three possible outcomes: “It could be a sensational drug that will make people survive,” Schooley said, it could have absolutely no effect at all, “or it could make patients sicker. We won’t know until we make patients go through it.”

While optimistic about AZT, Schooley and other scientists tend to place their excitement on hold. They have learned, often through heart-breaking experience, that a drug that seems promising in the test tube can still produce a disappointing outcome in humans.

It has happened already in the AIDS fight. The experimental use of Suramin, a drug once regarded as effective against the AIDS virus, was discontinued in April after it was tested on about 120 patients with Kaposi’s sarcoma, a capillary cancer associated with AIDS. Dr. Clifford Lane, a researcher with the National Institute of Allergy and Infectious Diseases, which supervised the Suramin trials, said that the drug “caused rapid progression of the disease and patients died at a faster rate than would have been expected.”

20 Patients Enrolled

Schooley, who is conducting his study with Dr. Martin Hirsch--another leading U.S. AIDS researcher--has enrolled 20 patients. Mullican was the last to be admitted. “I must have been in the right place at the right time,” Mullican said.

To qualify, all must have either AIDS, or AIDS-related complex (ARC), a milder form of the disease. The AIDS patients must have had no more than one episode of PCP and must have recovered from it within 120 days of their entry into the program. The ARC patients have to have had thrush--an oral condition associated with impaired immunity--or significant weight loss.

The study is not limited to gay men--it includes, in fact, one woman--but none of the AIDS sufferers can be alcohol or intravenous drug users, and none can have Kaposi’s sarcoma.

The controls have to be strict or the results may be flawed, Schooley said, adding that it troubles him deeply to deny entry to a desperate patient.

“I had one come in with a bogus letter from his physician saying he’d had only one bout with pneumocystis,” Schooley said. “I called the physician. Actually, he’d had several bouts. The day I told him, his father called me and said: ‘You killed my son today.’ I felt badly for the patient, but the only way we can do it is the way it’s outlined.”

Controls Called Necessary

The NCI’s Sam Broder, who conducted the first limited studies of the drug in humans and calls Schooley one of the “brightest clinical investigators in the country,” said that his own early work was “not a randomized study” and emphasized that “appropriate controls” are necessary “to correct for potential bias”--the possibility that a doctor might unwittingly select healthier patients to receive the drug, for example, and thus possibly skew the results--”and the changing quality of disease.”

Each patient who comes into the program undergoes an extensive series of tests. His kidney and liver function are checked and his blood is analyzed to determine the extent of the depletion of T-cells, a critical part of the body’s immune system.

He is also given four skin tests using substances that would ordinarily trigger responses from a healthy immune system--a red lump on the skin indicating the immune system has responded and is working, no lump indicating a damaged immune system. Mullican, like others in the study, had no reaction. “People with AIDS can’t get an immune response,” Schooley said.

One encouraging result of early tests with AZT, Schooley said, was that Broder “got reactivity” in patients taking the drug, possibly indicating the return of some immune system function.

Psychological Tests

Each patient in the study also must take psychological and hand coordination tests. This establishes a base line for future study of neurological disorders that may result if the virus infects the brain. “Our hope is to get a feel for whether there are any gross changes,” Schooley said. The tests are repeated over the course of several months.

“One part consisted of word memory,” Mullican said. “They give you 12 unrelated words and you have to repeat them back--like ‘cry,’ ‘tasty,’ ‘whirlpool.’ Then they do numbers. They want to see how sharp your memory is at this point.”

Patients are divided into two groups. The first group contains patients with extremely low T-cell counts--less than 100 cells per cubic millimeter of blood. The second is somewhat higher--100 or more. Normal is 1,000 to 3,000. Mullican’s count was 78.

“Within each of these groups, half will get the drug and half will get the placebo,” Schooley said. “We want to make sure we don’t end up with just the healthier group getting the drug.”

After six months, those on the placebo will be given the opportunity to go on the drug. Mullican intends to take that option if he has been taking the placebos. He can only hope, in that case, that the switch would not come too late.

Independent Monitors

“While the study is going on, there is an independent safety monitoring board made up of independent scientists,” Schooley said. “If they find in two months that people are either getting sick--or getting significantly better--they will stop the study. They will either stop giving people the drug--or give it to everybody.”

In the meantime, no one knows who is taking what.

“The pharmacy here at the hospital has a series of numbers,” Schooley said. “Each number is assigned to a patient. Another envelope has the key to which numbers get the drug.”

When Mullican talks about what is ahead there is a sense of unreality about his words--perhaps because he now seems so healthy. But he said his first encounter with pneumocystis gave him “a very good taste for what it’s like to be very ill. I was never so sick in my life.”

He makes casual references to death. He talks about one of his favorite musical groups, Pink Floyd, and says he wants the music from its album “The Dark Side of the Moon” played at his funeral. “On an appropriate digital stereo system, of course,” he added. He talks about cremation, and about writing his will.

And, however ominous his situation may be, he still finds humor in it.

He recently described, for example, the intravenous medication that cured his pneumocystis, but reduced his blood sugar so precipitously that he ate Reese’s chocolate peanut butter cups continuously for two hours.

“I never want to see another one of those things again,” he said.

Mother’s Fear

And he chuckled, remembering how he took great pains to explain to his visiting mother the reasons why she could not catch AIDS staying in his apartment. He then walked into his bathroom, just after she had been in there, and discovered she had sprayed the room with disinfectant.

“I wouldn’t have minded, but I was still getting over pneumonia and couldn’t breathe,” he said.

Mullican is fortunate in some respects. Many AIDS patients have been abandoned by friends and families or have lost their jobs. Although the board of directors of his company tried to fire him when they learned he had AIDS, they later relented. Schooley has had frank talks with both Mullican’s family and his boss. All are supportive.

“This has drawn the family together,” Mullican said. “I know I will be taken care of. I don’t have to worry. I won’t be cast out and left to die on a park bench.”

He takes his bottle of capsules everywhere with him and even keeps a glass of water in his car, just in case he is stuck in traffic when it is time to take a pill. Lately, he has experienced some mild nausea and fatigue. He doesn’t know what that means.

“I’m hoping they are side effects brought about by the drug,” he said.

‘The 40 Questions’

During the first month of the program, he and Schooley saw each other once a week. Now they meet every other week. Schooley asks what he calls “the 40 questions,” including: fever? chills? night sweats? tiredness? rashes? headaches? blurred vision? shortness of breath? On and on.

He also draws blood. It will be analyzed to see if there is any change in the number of T-cells, and it will be cultured for the presence of the virus.

“Will there be an increase in T-cells?” Mullican asked Schooley during his most recent visit.

“We don’t know,” Schooley replied. “But the purpose of the drug is to keep you from getting sick again. The bottom line is: If you never get sick again but you have no T-cells, we won’t care.”

Since AIDS establishes different patterns with different patients, there is no way to know whether Mullican would have suffered another siege of pneumocystis by now if he had not joined the trial. At least for the present, though, things look good.

“We’re very excited with every day he goes without problems,” Schooley said. “He looks great. He’s even gained some weight.”

Mullican laughed. “That’s easy for him to say. He doesn’t have to go out and buy a whole new set of clothes.”

Occasionally, Mullican feels blue. Several weeks ago he returned from a trip to the Northwest. “It was wonderful and beautiful,” he said. “But I felt a little sad thinking that I might be seeing these places for the last time.”

Still, Jeff Mullican, Patient No. 1012, remains optimistic.

“All is well, save for some depression and fatigue,” he wrote recently to a friend. “Could be a lot worse. Could be raining.”