San Francisco Chronicle - Thursday June 29, 1989
Randy Shilts, National Correspondent

The last five of 14 local AIDS patients participating in the study sat for two hours in a medical suite in downtown San Francisco yesterday afternoon while a solution containing a purified Chinese version of the drug GLQ-223, or trichosanthin, dripped into their veins.

The patients were taking part in a four-city study organized by the San Francisco-based Project Inform, an AIDS treatment information and advocacy group. The five-week study has bypassed the Food and Drug Administration approval mechanisms in an attempt to get speedier answers about the drug's toxicity and possible benefits.

A spokesman for the FDA said the agency had begun an investigation of the legality of the study and expects to complete its review within "the very near future," possibly by next week. No Regrets

Participants yesterday said they had no second thoughts about their involvement, despite the investigation and criticism from mainstream researchers.

"I could care less" about the FDA probe, said Robert Pitman, 48, a local playwright. "I have an absolute right to make decisions about my treatment for myself. I'm an adult, fully cognizant and absolutely well informed about the risks involved with this."

Pitman expressed doubts that he could wait until conventional FDA tests have been conducted, given the severe deterioration in his immune system in recent months. "I very well might not be around once that happens," he said.

One of the doctors involved with the monitoring of the patients' immune systems said the drug appeared to be affecting the levels of a protein known as p24 antigen, which is thought to reflect the level of viral activity by HIV. Significant Resuts

On the average, the p24 antigen levels of patients in the study had dropped by 50 percent, according to Dr. Larry Waites, a private San Francisco doctor involved in the treatment program. One patient's p24 level dropped from 1,100 to 150, he said.

"I've never seen that kind of drop before," Waites said. "It's very rare to see that much improvement."

In theory, such a drop may mean a decrease in HIV attacks on the immune system. If the drug works in patients as it has in the test tube, viral activity would be decreased and patients would see a progressive restoration of their immune system, enabling them to fight off serious AIDS-related ailments.

In some of the patients, numbers of T-cells, the immune system cells that are attacked by HIV, have also begun to rise, Waites said.

He and study organizers, however, cautioned that it is still too early to evaluate the effectiveness of Compound Q and its possible side effects. Results are expected within 30 to 60 days, they said. Call for Caution

In a press conference yesterday afternoon, study organizer Martin Delaney, co-director of Project Inform, strongly cautioned HIV-infected people from trying to administer their own doses of Compound Q.

"We need more information before we start telling people to use this drug," Delaney said. "We want to urge people not to try to self-medicate or get their doctors to start treatment. Please folks, hold tight."

Experts also said that some forms of trichosanthin available from herbalists could have devastating side effects because they have not been purified to remove toxins. The drugs used both in the underground and official studies of Compound Q are purified extracts of the herb, which is derived from the root of a Chinese cucumber. FDA Investigation

In Washington, FDA spokesman Brad Stone said an agency investigation of the study has begun and should be completed "in the next few days."

Stone declined to say what action the agency might take at the conclusion of the probe.

"I don't want to speculate on it because I don't want to foreclose things, and I don't want to scare people," he said. "We're waiting to see what the circumstances are and what's needed."

Meanwhile, AIDS organizations and gay groups in San Francisco and around the nation began to close ranks in support of Project Inform.

"There is tremendous support for this study continuing," said John Belskus of the Community Health Coalition.

"We'd do whatever was necessary to protect the people who went out on a limb in this study," said Terry Beswick of the San Francisco chapter of the AIDS Coalition to Achieve Power (ACT UP). "We'd be up in arms if they tried to do anything to them."

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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