I believe patients who get actively involved in their own care do better. And if a patient wants to try various things I go along with them as long as what they try won't hurt them. Like acupuncture and herbal teas. If they ask me, I tell them I don't think they're of any value. But the last thing I would want to tell them is 'I know they don't help.' Because I don't know that.
--Dr. Neil Schram, Kaiser internist
Like Dr. Neil Schram, many doctors who treat AIDS patients appear increasingly tolerant of alternative treatments for the disease. They're not saying "no" to remedies they believe won't be harmful.
But they're not saying "yes" to snake oil, either.
"The doctors obviously do not want their patients taking anything that would conflict or interact with their treatment or interfere with promising therapy," said Dr. Mervyn Silverman, former director of the San Francisco Health Department and current president of the American Foundation for AIDS Research.
"But physicians who are caring for many AIDS patients are a lot more open (now)," he said. "They're saying OK to visualization, acupuncture, herbal remedies, things like that."
"I certainly believe in the concept of a positive approach (to the disease)," said Schram, former director of the disbanded Los Angeles City/County AIDS Task Force. "It does make a difference."
Some of Schram's patients have attended seminars and weekly sessions with Louise Hay, a Los Angeles metaphysical counselor, he said. Others have gone through the AIDS Mastery weekend workshops started by Sally Fisher of Northern Lights Alternatives in Hollywood or the "Experience Weekends" run by Los Angeles clinical psychologist Rob Eichberg.
Hay, Fisher and Eichberg also conduct their seminars and workshops in many other U.S. cities and several foreign countries.
Attendance at Hay's Wednesday AIDS seminar at Plummer Park in West Hollywood has grown to about 450 people each week. She started the group in February, 1985, with six male AIDS patients. She accepts contributions for the Wednesday seminars, but there is no actual fee.
Hay also sells an AIDS tape and a video and is currently finishing a book promoting a positive, self-healing approach to AIDS. She is paid a set fee for her two-day seminars by the group sponsoring the event in each city. The cost to individuals for the weekend seminar ranges from $85 to $150.
Fisher's three-day Mastery workshop costs $250, but she said there are discount rates and "scholarships" for persons who cannot afford the fee. "We ask people to pay what they can," Fisher said.
Eichberg, who charges $300 per person for a weekend workshop, has a similar discount fee structure. Both Fisher and Eichberg said that no AIDS or ARC patients ever are turned away because of lack of funds.
"The AIDS Mastery is not about dying, it's about the quality of life. Do you suffer or do you live your life with quality" is the question, said Fisher, who got into her current metaphysical work after her son, actor Fisher Stevens, was diagnosed with Hodgkin's disease 10 years ago.
"We tried everything," Fisher said. "We went to Sloan-Kettering (a cancer hospital in New York City). He had radiation and his spleen removed. We tried megavitamin therapy, yoga, went to Louise (Hay), who was just getting started then. I even took him to a witch doctor. I don't know what worked. But he's fine now. He doesn't have it.
"If the body is going to heal, then emotion and psychological support are crucial," Fisher added. When there is no hope, people stop trying. . . . I do not advocate alternatives instead of medicine. I think it is a complement (to medicine)."
'We're Getting Bigger'
John Hampton, who was diagnosed with AIDS last July, attends Hay's weekly sessions, and now is a Mastery leader.
"We used to be a small family. You used to know everybody who attended," Hampton, 30, said of the Mastery weekends, which offer spiritual and practical direction for dealing with AIDS. "But we're getting bigger and bigger."
Hampton, who lead a recent Mastery weekend in Laguna Beach, said that more than 1,000 people have attended the sessions in Los Angeles, San Francisco, New York, Chicago and Dallas.
"We've done 15 workshops in Los Angeles alone," he said, "with about 20 people for each weekend."
AIDS Mastery weekends also have been held in London and Edinburgh, Scotland.
"I had been in a lot of denial, pretending I didn't have the disease," Hampton said. "With the Mastery I went from that to totally accepting it and deciding I wanted to heal myself. There is so much support and such a loving group of people in the workshops. There is a lot of spiritual work done."
Hampton is on a strict nutritional diet, works out at a gym and swims an hour each day. "I do visualization and meditation every day, too," he said. "The only thing we really have control of in this life is our thoughts."