A Way to Buy Time? : An AIDS treatment underground has been operating here for over a year. The therapy is provided by a respected physician. AIDS patients just hope they will outlast the waiting list.

John arrived exactly on time for his Monday morning appointment. Tall, blue-eyed and slender, he was about to undergo a treatment--a treatment that might not make him better and that could theoretically threaten the medical license of the physician offering it.

But the 41-year-old blond businessman looked refreshed and calm, even eager. Minutes later, the technician from the doctor’s medical laboratory welcomed him warmly. He ushered John past a bubbling aquarium, down a hall and into an examination room.

A plastic bag of blood plasma hung beside the bed. The plasma was collected from anonymous donors, people not as sick as John, but who match his blood type. As John sat down, the technician gave him a tablet of Benadryl and a tiny cup of water. “Just in case of an allergic reaction,” he explained. John swallowed the pill and stretched out. The technician swabbed his forearm with rubbing alcohol, gingerly inserted the intravenous needle and started the plasma flowing. For the next 20 minutes, John lay still as it dripped into his body.

John had just undergone passive immunotherapy, an experimental, underground treatment he fervently hoped would halt the deterioration of his immune system from AIDS. He tested positive in 1985 for the human immunodeficiency virus (HIV), and since then has had Kaposi’s sarcoma, a cancer common in AIDS patients, removed from his leg. In late 1988, his T-cell count, one medical barometer of immune system functioning, declined drastically.

The doctor who provides the monthly transfusions is doing so because he believes the treatment shows promise. John has a more immediate motivation: he wants to live.

During the last year, 65 other AIDS patients have joined this Los Angeles underground. Before the treatment--which does not have the blessing of the Food and Drug Administration--almost all had lost weight. Many have had numerous hospitalizations to treat pneumonia, inflammation of the pancreas, liver problems and spleen abnormalities.

Each has gone quietly to the same medical laboratory, operated by a prominent Los Angeles immunologist, who agreed to discuss the treatment and his reasons for offering it on condition of anonymity.

Developed by an English scientist, the treatment is believed to boost the immune systems of AIDS patients in declining health, by giving them antibody-rich plasma from patients who test positive for the human immunodeficiency virus (HIV) but are still healthy.

All but three of the 66 AIDS patients who have undergone the treatment in Los Angeles are still alive, according to the physician who offers it, and most credit their their current state of relative health--and their improved T-cell counts--to the therapy.

The first patient, who has by now received 14 infusions, said he has gone from sleeping around the clock to a more productive life that includes work and walking a mile a day. He will speak freely about his progress, but won’t allow his name to be used, since his family has no idea he has AIDS.

His testimonials and those of dozens of other HIV-positive patients--coupled with the convictions of a handful of doctors--have spawned the treatment underground. Even though it has operated for more than a year, it is still not well-known, some say, even by AIDS patients. Many hear of it by word of mouth or through articles in the gay press, just as they have heard of many numerous other AIDS underground treatments. The waiting list, which now includes 77 people, is unusual. It operates not on a “first-come, first-served” basis but a “sickest-go-first” order.

The covert network was born of one man’s gut-wrenching depression. In the spring of 1988, Christopher Gerard, a former actor and business manager, returned home after another funeral, feeling dismal. It was his 45th friend to die of AIDS. “To say I was depressed is understatement,” recalls Gerard. “Bobby was a gifted artist, a kid I grew up with in New Jersey. To make it worse, his brother had passed away--from AIDS--just six months before.” Gerard sat in the Hollywood Hills condominium he shares with his companion of nine years, feeling paralyzed.

Some days later, he got a telephone call from a friend, and they talked about the terrible toll of AIDS, of mutual friends lost to the disease. Then she mentioned a Cable News Network report about a new AIDS treatment. She remembered the name--passive immunotherapy--and had written down the name of the scientist and his university.

Gerard spent the next few days thinking. He tracked down Abraham Karpas at the University of Cambridge. “I asked him, “What’s being done in America?’ ” Karpas knew only of a study planned by the Bronx Veterans Administration Medical Center.

Gerard enticed Karpas to fly to the United States in November, 1988. Together they persuaded the Los Angeles physician to begin offering the treatment to AIDS patients. Since the first patient was infused 14 months ago, Gerard has asked 27 other physicians to do the same. One New York doctor is about to begin offering the treatment, Gerard said, and he’s in touch with a Texas doctor who has expressed interest. Dr. Richard Stiehm, UCLA professor of pediatrics and co-director of the Los Angeles County Pediatric AIDS Consortium, who already knew of Karpas’ work, plans to give the treatment next week to a child in the advanced stages of AIDS.

But all the other physicians Gerard asked to provide the therapy have turned him down. “Without a study, they are terrified,” said Gerard, who directs the underground and serves as president of the L.A. chapter of the Passive Immunotherapy (PATH) Foundation, a nonprofit educational organization based in San Francisco.

The plasma used in passive immunotherapy is an unapproved drug and, strictly speaking, its use is illegal, said Allen Davidson, spokesman for the California Department of Health Services’ Food and Drug Branch. “There is legal opinion indicating a physician can use new drugs within the confines of their practices,” Davidson added, “but doctors (who do so) do open themselves up to liability.”

The Los Angeles doctor who provides passive immunotherapy is well aware of those risks but passionate about the effectiveness of the treatment. He says he can’t believe he would ever be penalized for providing what he views as compassionate care, and has invested “at least six figures” of his own money to finance treatments for patients who cannot pay. Gerard says he has raised another $20,000 to fund treatments.

In a way, money may be the easy part. Week after week, Gerard schedules an information meeting, explaining to a new group of AIDS patients about passive immunotherapy, about the need to keep the doctor’s name confidential, about the overwhelming need to find more donors and, last but not least, the chances of getting to the top of the waiting list.

At 45, Gerard is trim, with the kind of solid good looks and passion for his cause that would seem to make persuasion second nature. But Gerard has not only been rejected by cautious physicians; he has appealed unsuccessfully to several AIDS groups for donors, patients and support. “In the beginning,” said Gerard, “I called one AIDS group 30 days in a row.” But skepticism and apathy are almost inevitable, he says, when patients hear about one “miracle” treatment after another. Some see passive immunotherapy as just another flimsy promise, another blind alley. “Some people are just ‘drug du joured’ out,” Gerard said.

Even so, the word about passive immunotherapy is spreading, and “Establishment” medicine is beginning to give it a serious look. The clinical trial at Bronx Veterans Administration Medical Center has enrolled 70 patients. “The results seem encouraging,” said Elliott Block, president of Medicorp, the Montreal-based firm funding the study. And now, two other clinical trials of the treatment may begin this summer. HemaCare, a Sherman Oaks-based provider of blood-related services and products, will enroll up to 225 patients, said company spokeswoman Tanya Youvan . Dimension Laboratories, based in Utah, will start a 40-patient study soon, said James Marshall, president.

Passive immunotherapy for AIDS is simple in concept but not in execution. Blood plasma from donors is first tested to be sure it meets strict criteria. Donors who don’t qualify may not have high enough concentrations of antibodies (protective proteins that fight foreign proteins) in their blood; they may have low levels of “helper cells” (the so-called sentinels of the immune system) or they may have active HIV virus. If their plasma passes all tests, it is processed and treated to inactivate any infectious agents before infusion into AIDS patients. Recipients get plasma that has been taken from several donors and mixed to ensure a good cross-section of antibodies.

The treatment works, proponents say, because the plasma from the still-healthy donors contains high levels of antibodies against the virus that boosts the immune systems of AIDS patients. (It is different than the treatment recently reported by Atlanta doctors, who diverted an AIDS patient’s blood into a heat exchanger, heated it to 115 degrees Fahrenheit, and reinfused it. They claimed they found no evidence of the virus three months later.)

Passive immunotherapy is expensive, partly because the process of plasma-gathering is so painstakingly arduous. The cost per donor is about $400 to run the necessary blood-screening tests. For AIDS patients, the cost of each treatment ranges from $300 to $700, depending on the number of donors who must be screened to find enough qualified ones. Many recipients pay nothing for the treatment; others pay on a sliding scale. “It really has the best potential right now,” the Los Angeles doctor who offers it said recently. “I would love to find a drug with the same potential.”

The doctor and other proponents of the therapy point to British studies that find it can buy time. In 1985, Karpas began providing the treatment, eventually infusing 17 patients. Of the nine who remained in follow-up, three are still alive, he told physicians attending a recent lecture at UCLA, where he was invited to speak by Stiehm.

With the treatment, he said, “we see a dramatic increase--about eightfold--in the levels of antibodies within a month.”

Other researchers, reporting in the medical journal, The Lancet, in late 1988 on use of the treatment in six patients with advanced AIDS, said the antibody effects persisted for up to 11 weeks after a single infusion.

The health of donors does not seem to suffer. Karpas followed one donor for about a year and found that the donations “didn’t affect his T-4 count at all.” Said one Los Angeles man, who began donating six months ago: “My T-4 count has remained constant.” He cites psychological benefits as well. “Being able to donate my plasma takes me out of my own fears. It’s very healing.”

Even though some doctors say there is not yet enough science behind passive immunotherapy, activists counter that treatment is needed now, not after a dozen studies. Gerard points to the plight of men like Matthew, an AIDS patient who spoke recently at one of the weekly information meetings, about his first experience with passive immunotherapy.

Gerard opened the meeting, as usual, by explaining the treatment to newcomers. Then Matthew, a dark-haired man with the physique of a long-distance runner but a fraction of the stamina, shuffled to the front of the classroom and half-sat on the teacher’s desk. Like most of the 14 others in the room, he stopped short of telling his full name, wary of jeopardizing his own privacy and the life of the underground.

“Statistically, I really shouldn’t be here right now,” Matthew began. “I was diagnosed with AIDS in 1985. I tried an experimental treatment . . . and it just about killed me. I got myself out of the hospital Sunday to start this therapy Monday. That’s how absolutely convinced I was something good would come out of it. I could barely walk in to the treatment, but I walked out with a spring in my stride. I will be there next month, no question. I had absolutely no side effects.”

He started to sit down, then added one last comment. “All of this is not done in some dank, dark basement. I watched MTV while I had this treatment.”

Some U.S. AIDS experts agree that the treatment looks promising. “Studies appear to give some benefit to patients by making them feel better” and decreasing their viral activity, said Dr. Joel Weisman, UCLA assistant clinical professor of medicine who cares for many AIDS patients in his Beverly Hills and Sherman Oaks practices. Weisman, with Dr. Michael Gottlieb, is credited with writing the first published report describing AIDS in 1981.

“It gives patients a chance to rejuvenate,” said Dr. Michael Roth, a Santa Monica allergist and immunologist who cares for many AIDS patients. “The earlier it is used, the better. But even if it is used late (in the course of AIDS), people can feel physically better.”

Even so, there are substantial caveats voiced about the treatment and the underground. “The best way to validate a treatment is to do it (in a) medically correct (way), which means not underground,” said Elliot Block of Medicorp, which also licensed HemaCare to provide the treatments for the upcoming clinical trial.

Weisman brings up a worrisome concern. There is some evidence, he said, that Kaposi’s sarcoma is caused by a different organism than HIV. “It’s only a theory, but there’s a possibility of transmitting KS (via passive immunotherapy) to those who don’t have it.”

Other experts say passive immunotherapy is too complicated to set up in a doctor’s office and are concerned about costs. “It is labor intensive,” said one doctor familiar with the process. “And it’s dependent on donors.” The blood must be cleansed properly to eliminate any infectious agents. “All together,” said one AIDS activist, “it’s far more complicated than ‘Here, take this pill . . .’ ”

Some criticize the treatment on the grounds that the studies in England involve too few patients. Others believe the treatment may work for only a small segment of patients. Said Martin Delaney, executive director of Project Inform, a San Francisco clearinghouse for HIV treatment information, “From the researchers I talk to, it’s a relatively narrow approach that only deals with a small part of the pathology of AIDS.”

Most, including Karpas, see its role as a “buy-time” therapy, a treatment that could perhaps be used in combination with other treatments. In the future, Karpas predicted, antibodies will be able to be artificially produced in the laboratory, eliminating the need for donors. Some AIDS patients cheer the approval of the two planned studies. But others worry that a patent dispute simmering between the two companies approved for the clinical trials will delay the start of the studies.

A sense of humor helps, said Gerard, who says he has heard rumblings of clinical trials for at least two years. “I’ve threatened,” Gerard joked, “to make up T-shirts for HemaCare that say, ‘Next week, next week.’ ”

Keeping the underground alive is an uphill battle, even for someone as hard-driving as Gerard. Some of his fellow activists say he has tunnel vision. So intent is he on promoting passive immunotherapy that he sees a role for little else. In his quest for donors and doctors, some say, he can be abrasive. And he’s not above name-calling, said one acquaintance. “Chris is quick to point fingers. He doesn’t like some doctors.”

Gerard takes it all with a grain of salt and a shrug of the shoulders. “I’ve even been accused,” he said with a laugh, “of looking for a political career.”

Gerard seems to spend less time worrying about what his detractors say than about getting burned-out AIDS patients enthused about the treatment. Those who do come to the weekly information meetings are often coaxed into it, he said, by friends, lovers, mothers, fathers and others concerned about the patient.

Beyond finding a way to lengthen the life of AIDS patients, Gerard has another dream. “I would love to create a coalition of terminally ill fighters,” Gerard said. “People with leukemia and Alzheimer’s, for instance. People with multiple sclerosis and Lou Gehrig’s disease. We all hear the same thing--that it will take five to 10 years more of research (to find a cure).”

Three telephone lines in his condo are devoted to the treatment program. Some days, the calls seem never to stop. The conversations with AIDS patients--some of whom have been on the waiting list for months--can take their toll. “When the phone rings,” Gerard said, “sometimes I say aloud, ‘I know, I know. You’re going to die.”’ Then he does his best to empathize.

Fending off bribes comes with the territory. “One person offered me $10,000 to be next for treatment,” said Gerard, who patiently explained the philosophy of “sickest go first.”

One man knows that all too well. He’s been on the “noncritical” waiting list since February but has been “bumped” 14 times when sicker people needed the treatment. “I feel disappointed, but I do understand,” he said. “I’ve seen so many friends die hideous deaths.” On another occasion, Gerard said, one hopeful recipient offered to “barter” donors. “I can get you 10 donors,” he told Gerard, “if you just get me treated.”

But Gerard has found some people to depend on. Father Jack Beattie, the pastor of St. Ambrose Church in West Hollywood where Gerard attends Mass regularly, provides a school classroom for the weekly information meetings. Gerard says his religion is a wellspring of comfort as well. That, he said, is largely due to Father Jack’s attitude: “This is the one place,” said Beattie, “where everyone should feel welcome.”

Preston Coons, 39, of Silver Lake, serves as volunteer coordinator for the underground, intent on finding donors. Since February, he has carried around flyers explaining passive immunotherapy and the donor search. “I have put up these flyers all over my neighborhood--in the bookstore, the restaurant, the laundromat, my dentist’s office, the discount pharmacy--everywhere I thought there would be healthy, HIV-infected individuals. So far we’ve had good response.”

Gerard said he gets much support from his long-time companion and from his mother. And Gerard takes solace from the testimonies of optimists like John.

Since testing positive, John has tried Science of Mind, self-hypnosis, acupuncture and medication. Nothing worked for long, and he had gotten discouraged. The opportunity to try passive immunotherapy has given him hope, he said.

“I feel I am taking control. I know this is only going to buy me time. But I want to stay where I am--with an immune system impaired but still working. When you have AIDS, you really don’t have many choices. The time clock is ticking. If I thought it would do any good, I would eat wooden nickels.”