New Drug Tested : Experiment Gives AIDS Victim Hope

The telephone call from his physician, Dr. Robert T. (Chip) Schooley, reached Jeffrey Mullican, a 32-year-old trade association executive, in his office at 1:26 p.m. on Thursday, Sept. 18, and lasted only a few tremulous seconds. Later, after yet another of his seemingly endless struggles to keep his balance between fear and hope, Mullican called his parents.

“Mother, I have good news,” he said, and repeated what Schooley had told him. “Oh my God,” she said. “I’m so happy I could cry. Our prayers have been answered.”

In fact, they had and they had not.

Hope is the oxygen of the spirit--the indispensable, life-sustaining possibility that the terrors of today may lift tomorrow. But, as Mullican has learned, hope has a dangerous tendency to surge out of control, to sweep away the best-built defenses and open the way to risks of unbearable disappointment. For almost six months, he has been a man on an emotional tightrope, teetering between euphoria and despair.

Mullican, who is gay, has AIDS. Four months ago, facing almost certain death in less than a year, he made a fateful leap by joining a nationwide clinical test of a potentially helpful new drug--a test in which half the patients would receive the drug for six months while half got medically worthless sugar pills as a control, with neither the patients nor their doctors knowing which was which.

Although necessary to assure scientific impartiality, the so-called double-blind test meant that, even if the drug proved beneficial, it might come too late for those who had received the placebo.

Use of Drug Expanded

Last week, scientists monitoring the overall progress of the test at 12 medical centers across the country decided that patients receiving the drug, called azidothymidine, or AZT, and manufactured by the Burroughs Wellcome Co., were doing so much better than those on the placebo that medical ethics demanded the experiment be halted and AZT be given to all patients.

For Mullican and thousands of other AIDS patients, that was potentially hopeful news--if it was not already too late. The call from Schooley, who headed part of the study at Massachusetts General Hospital, answered a crucial question for Mullican:

“I wanted you to know,” Schooley told him, “Burroughs Wellcome just called and gave us the numbers (the identifying code numbers) of the people who have been on the drug. You’re one of them.”

Initially, Mullican remembers, he was very calm. “I won’t let myself get too excited about this,” he said. “It’s only a first step--a very positive one, but it’s certainly far from an answer. The unfortunate truth is that I still have AIDS.

“It’s a little like sitting on Death Row and getting a reprieve, but not knowing how long that reprieve is going to last,” Mullican said. “I would like to think it’s going to last 50 years. But there’s no way of knowing.”

What Mullican understands is that researchers do not consider AZT a cure and that no one yet knows how long the drug will prolong life, or what its side effects might eventually prove to be.

“In that sense, individuals like Jeff are real pioneers,” said Schooley. “They’ve been on the drug longer than almost anyone else.”

Acquired immune deficiency syndrome, a viral disease that destroys the immune system, has primarily afflicted male homosexuals and male bisexuals, intravenous drug users and recipients of contaminated blood transfusions and blood products such as those given to hemophiliacs. AIDS is transmitted through intimate sexual contact--through the exchange of body fluids such as semen and blood--and through the sharing of hypodermic needles.

Thousands Have Died

The disease has already taken nearly 14,000 American lives and, without a medical breakthrough, is expected to claim hundreds of thousands more in the coming years.

It usually manifests itself in the form of one or more specific conditions: The patient suffers from certain rare cancers, from neurological disorders or from a rare and insidious respiratory infection called pneumocystis carinii pneumonia.

Mullican had suffered one bout of pneumocystis last April, when he was diagnosed as having AIDS. He had been doing extremely well since his one episode of pneumocystis: He had regained the 20 pounds he lost during his illness; he had been able to work every day, and--most important--he had not had a recurrence of pneumonia.

Still, AIDS patients with pneumocystis typically survive no longer than 35 to 40 weeks. That is why Mullican was so anxious about the possibility that he could have been one of those receiving the placebo instead of AZT for the 14 weeks he had been taking the pills.

Future Uncertain

That is also why--encouraging as the early results are--Schooley was reluctant to predict the future--Mullican’s or any other patient’s.

“In this sort of a study, all we’ve seen is fewer people dying,” Schooley said. “It could just mean that the rate of deterioration has slowed down. It also may mean that the immune system is actually improving. If that’s the case, the improvement could be indefinite. It could also mean that something in between is happening.”

Mullican’s tests have indicated a slight strengthening of his immune system, although the change may not yet be great enough to draw any conclusions. Several weeks ago, before Mullican or Schooley knew that Mullican had been taking the drug, Mullican’s “T-4 helper cells”--the immune system cells killed by the virus--had nearly doubled since he entered the study, increasing from 78 per cubic millimeter of blood to 136 per cubic millimeter. However, normal blood contains between 1,000 and 3,000 T-4 helper cells per cubic millimeter.

No Enormous Gain

“We haven’t had anybody in the study go from 50 to 1,000,” Schooley said.

One final encouraging sign: It now takes longer to culture, or grow, the AIDS virus from Mullican’s blood, 11 days last time, contrasted with seven initially.

“Some have looked at that as a way to determine how much virus is present,” Schooley said in an interview some weeks ago. “I think that’s too imprecise. A four-day difference is reading too much into it. These are all things we’d like to see--but we don’t know what it means to him. We won’t know until we look at it within the context of the whole study.

“The most important factor is that he hasn’t gotten sick,” Schooley declared.

“I’d love to be able to tell Jeff that now he has a normal life expectancy,” he said. “But all I can tell him right now is what we’ve seen in the study: that, over the short term, there are many fewer deaths than we would have expected in the drug group. We hope this continues.”

In announcing an end to the study, federal health officials and company representatives said there had been 16 deaths among 137 patients receiving the placebo and one death among 145 patients taking AZT. They called that difference “highly statistically significant.”

Results of Study

Of the 20 patients enrolled in Schooley’s segment of the study, no one died in the group receiving AZT and only one suffered a second siege of pneumonia. Two in the placebo group died; both had been suffering from AIDS Related Complex, or ARC, another form of AIDS. Often, ARC can be as debilitating--and as fatal--as AIDS.

“The AIDS patients in our study tended to be healthier, while the ARC patients were sicker,” Schooley said. “One of them was one of the sickest patients I’ve ever seen.”

The drug’s side effects include headache, nausea, anemia and leukopenia--a reduction in white blood cells. Some of Schooley’s other patients who turned out to be on the drug required occasional transfusions. Mullican, who experienced only nausea, did not.

AZT works by playing a chemical trick on the virus that causes AIDS. Scientists believe that it stops the growth of the virus by disrupting the chemical chain the virus uses to replicate itself inside the body of an AIDS patient.

‘Push the Balance’

“The relationship between this virus and the host is a dynamic one,” Schooley said. “We’re trying to give the host some help in dealing with the virus. What we do with antiviral drugs that work is push the balance in favor of the host, and hopefully the host ends up winning the war.”

For Schooley too there is the constant problem of keeping hope alive but under control. “In the euphoria of this being a great step forward--which it really is--we need to continue to push on many fronts and continue to improve what we do,” he said. “This is not a panacea. People need to be careful and not be blown away by an improvement in one group of patients being studied.”

Schooley paused. “This is very much like the first few automobiles at the turn of century. It was nice not to have to hitch up the horse anymore, but we’ve got a lot better cars now,” he said.

Throughout the summer, as the test had ground forward and Mullican had kept taking his white capsules--contents unknown--every four hours, he held his hopes under rigid control. Indeed, he says now, he was preparing himself for death.

Describing his feelings several weeks ago, before he learned that AZT was proving helpful and that he had been receiving it from the beginning, Mullican said:

“It’s like a waiting game, and I’ve got the upper hand right now. But that could change. It could change next week. I’ve always tried to think in terms of the future, and now I’m in a position of living one day at a time--and I don’t feel comfortable with that. I feel like all my options are so sharply curtailed.

“I’ve put my dreams of buying a house out of my mind. I’m still trying to figure out what things I want to do that I haven’t done yet, so I can do them now.

“I look at my life now and I don’t want to die. There’s so much I haven’t done and seen. And it’s not fair.”

Last week, recalling that period, he said, “I had accepted the fact intellectually that in all likelihood I would die, and I was starting to work on the emotional aspects of dealing with my death. I was putting things in order. I was doing my farewell tour, saying goodby to friends in other parts of the country, basically settling down for the winter, fully anticipating it to be my last--and saying goodby to the summer, thinking this would be the last summer I would have.”

Early in the summer, he took a series of trips, going back to cities where he had lived in the past, “going back to my homes and saying goodby to those places and to the friends I had made in those places.”

He went to the Pacific Northwest--to Seattle--where he once lived, and to Expo 86, the international exposition in Vancouver, B.C. “I enjoyed the exposition because it gave me a glimpse of the world I’ll most likely never get a chance to see. Because of my financial situation and my health, I don’t think I’ll ever be able to go to Europe or the Orient. It was a way to experience parts of the world I probably won’t be able to see,” Mullican said.

“It was nice being able to see my friends and spend time with them while I was in good health, but it was very, very sad leaving--particularly Seattle, which is my favorite city. I love the water. The mountains. It’s very clean; it’s very modern. It’s a very dynamic city. I just naturally feel at home there.

“At one time, I’d hoped to move back, but then I got AIDS and it looked like I could never move back.”

On Aug. 13, he went to Denver, where he had gone to college.

“Echo Lake, in the mountains west of Denver, is a place I would go to while I was going to school,” he said. “I’d go there to collect my thoughts, particularly during the time when I was coming out. Echo Lake is a beautiful mountain lake sitting at the base of Mt. Evans at an altitude of 11,000 feet.”

This time, “I returned there to think. I felt this was where I had to go, almost like a religious pilgrimage. This is where I could communicate with myself and try to figure out what to do with the rest of my life--however long that might be,” Mullican said.

After Denver, he went to Boise, Ida., where he visited friends and rode a raft down the Boise River. After that, he visited San Diego, where he spent an extended Labor Day weekend with two very close friends, a lesbian couple. He went to the beach and the zoo and “went tooling around with them in their miniature Jeep.”

“I love you very much,” he wrote in a note he left on their kitchen counter the morning he returned to Boston. He could not face them. “How do you say goodby? Each person is different. They say, ‘I love you,’ and if I can get out a, ‘Me too,’ I’m lucky. They know they may never see me again,” he said.

“All the way home on the plane, I kept thinking I’d seen my last glimpse of the Pacific--and yet, I was afraid to let myself be afraid.

“It seemed like the weather was cold and dreary and very depressing when I got back. It made me realize that the summer was essentially over. . . .

“My whole frame of reference after I was diagnosed was that this would be the best damn summer I would have--that I’m going to do absolutely everything in my power to go places and do the things I’ve always wanted to do. But at the end of the summer, after Labor Day, all that I had to look forward to was behind me--the trips and the excitement of summer. I started to fear and dread the coming months.

“You can’t help but scare yourself when you see how the disease is affecting other people as it progresses--like the other patients in my (AIDS self-help) group. You start to imagine that it’s going to happen to you.”

So faint did the flicker of hope sometimes become during that period that Mullican thought of suicide as a comforting alternative--an option to take if his condition worsened.

“I felt I was in a box,” he said. “I felt like I was in a dead-end job that I didn’t like, in a city I didn’t feel comfortable in, with a terminal disease that I didn’t feel I deserved--I figured, with all that baggage, why continue to live? If, in fact, I was facing a slow but steady deterioration, where the quality of my life would be decreasing--I did not want that.”

On Sept. 19, in an elaborate and highly publicized Washington press conference that made headlines across the nation, the Health and Human Services Department and Burroughs Wellcome released the results of the study and announced that it would make AZT available to as many as 6,000 additional AIDS patients in this country.

The evening before, Chip Schooley made his own announcements. He talked to his patients, then went home to suburban Hingham and told his own family. His wife was jubilant but his two young daughters, Kim, 12, and Beth, 9, seemed even more excited.

To a surprising degree, they had shared the drama all along. In school last December, members of Kim’s class had been asked to write down their Christmas wishes. Hers included “a cure for AIDS.” Beth, given the same assignment for New Year’s, independently expressed the same wish.

“I’m sure the teacher wondered what was going on at home to have that appear in the middle of things like ‘to have the Red Sox win the pennant,’ ” Schooley said with a chuckle.

“It’s a lot of fun as a father to have your children excited about what you’re doing. When you’re working in the laboratory on the effects of the virus on the immune system, that may be a little hard for them to understand,” he said last week. “But it’s easy for them to understand about a new drug that can help people.”

For Mullican, the task of reining in his hopes becomes steadily more difficult day by day. He knows all too well how fragile the promise of AZT may prove, but new vistas of possibilities open before him and he cannot stifle them.

“I feel hopeful for the first time in months,” he said last week. “I have not allowed myself to be hopeful before, but now I am. This really has liberated me to the point of feeling like I have control over my life again. I feel like a tremendous load has been lifted off my shoulders, that I have options again. I can start thinking about the future.”

Equally aware of the risks, Schooley has encouraged him to seize the time.

“I told him we don’t know what the long-term effects will be, we don’t know where anybody will be a year from now--but I really felt that it made no sense not to go ahead and start making plans--get back into the swing of life,” he said. “The worst that could happen was that we could be wrong, but if that’s the case, we’ll deal with that later.

“If this is the end of AIDS for Jeff, then he hasn’t wasted six months waiting for something to happen. I don’t see any reason for him to sit back and wait to see what happens next. I’d rather see him trying to write a story than sitting around reading a novel. I’d rather see him actively involved in life than passively waiting to see what happens next.

“We always run a risk in this sort of up-and-down disease, but that’s the nature of life, anyway. Ups and downs. I think that the best way to live is to plan for the ups and deal with the downs as best you can. And right now, I think he ought to be planning for the ups.”

What that means specifically for Mullican is that he can try to do something about a job and a city he has not been happy with. Rules of the original study had required him to stay in Boston; now--though he and other patients will continue to be monitored regularly--he is free to move.

“Four years ago, when I was offered the job here in Boston, I was very excited,” he said last week. “I expected Boston, because of all the schools, to be a place where I would meet a lot of brilliant people. I thought it would be a real dynamic environment. It wasn’t at all what I expected. Boston is bigoted, but its bigotry is hidden by what I call ‘Yankee gentility,’ which is harder to deal with. I find it a stifling environment.

“I’d love to go to California. I feel more comfortable on the West Coast. People are more ‘live and let live.’ They are generally more progressive and more fun. I also like the laid-back life style--it’s OK to be what you are. And the driving is sane.”

Mullican, who years ago watched his older brother slowly die from a kidney ailment, says, “The quality of life remains a very important issue. AZT has enabled me to maintain a high quality of life having AIDS. If I’m unable to maintain that quality of life, then I don’t want to continue.

“But for now, this gives me great hope.”

Schooley says, “One of the things I’ve always tried to do with patients with this disease is keep a ray of hope going. That ray is a lot brighter now.”

He paused.

“This is the first drug that I was really excited about. When we started the study, I thought it was likely the drug would have some positive benefits. It’s a real victory to have stuck with something and ended up with what appears to be a milestone in this whole tragic story.”