Verbal Clash Symbolizes Divisions in AIDS Struggle

AIDS patient advocates and traditional medical representatives clashed here Friday over results of controversial new treatments, with the leader of an underground drug-testing program announcing “powerful” new findings and the editor of a prestigious medical journal denouncing him for practicing “black magic.”

The confrontation came at a panel discussion on the third day of the International Conference on AIDS after Martin Delaney, head of unsanctioned experiments organized by his San Francisco-based Project Inform, released sketchy data purporting to show improvements in some AIDS patients who received the drug, Compound Q.

Dr. Arnold Relman, editor of the New England Journal of Medicine, a symbol of the medical establishment to many AIDS activists, chastised Delaney’s findings and, more generally, took issue with patients’ efforts to disseminate information on potential treatments such as Compound Q.

“If (inaccurate information) gets out without being reviewed by unbiased experts and gets acted upon, it leads to a lot of bad possibilities,” Relman said. “Money is wasted, time is wasted. . . . There is great initial enthusiasm, and then despondency, pessimism and despair.”

The clash provided a graphic metaphor for a contentious and crucial debate between the two main camps in the struggle to contain--and, it is hoped, eventually conquer--the AIDS virus: patient advocates who seek rapid answers and progress through experimental treatments, and established medical researchers who are wedded to painstaking scientific methods.

Increasingly, AIDS patients and activists are growing impatient with the deliberate pace of medical research into the disease and are demanding widespread use of experimental drugs they believe could hold the key to overcoming AIDS.

As Delaney noted Friday, debates about clinical trials are “more than academic discussions. For many members of my community, they are life and death questions.”

The debate inside Moscone Center was a more restrained version of the raucous confrontations outside where activists from the AIDS Coalition to Unleash Power (ACT UP) have been demanding new, quicker research methods in an attempt to speed life-saving drugs to patients.

ACT UP/New York, for example, issued a treatment research agenda this week listing 60 antiviral drugs, nine immune-system enhancers, 20 anti-infectives and 12 other AIDS drugs that the group said should enter clinical trials in 1990 or 1991 based on favorable test-tube data.

ACT UP also called for the immediate release of seven drugs that have been tested extensively and urged that another dozen be considered for release on the “parallel track.” The parallel track, pioneered last year with the antiviral DDI, allows patients access to a drug while it is being studied for efficacy.

Inside the meeting hall, Relman admonished Delaney, saying “there is no way on earth for anyone to interpret” the sketchy information Delaney presented. “Report your data fully to a responsible scientific body or medical journal,” he advised. “Let’s proceed in an orderly, rational, scientific way.”

At a press conference outside the center later, AIDS sufferer Joel Thomas offered a counterpoint to Relman’s argument. He said his failing health had been turned around by six infusions of Compound Q, a Chinese drug purified from the root tubers of a cucumber-like plant known as Trichosanthes kirilowii.

Thomas asked Relman if he would try Compound Q should he be diagnosed with AIDS and failing on standard therapies.

“I would probably do the same thing,” Relman conceded.

In releasing his finding on Compound Q, Delaney said his optimism was based upon improvements in the mean counts of Helper T cells, key sentinels of the immune system, the destruction of which is a hallmark of AIDS, in 46 patients after they were infused with drug.

He acknowledged that “this is a very dangerous drug” and added that it is too early for patients to make a treatment decision based upon available data. At least one patient died during the underground trial.

Underscoring the risk of Compound Q was another study authored by Dr. Larry Waites and co-authored by Delaney. The study, which will be presented at the conference today reported that 6 of 16 patients developed dementia between 36 and 60 hours after infusion, and two progressed to comas. The neurological problems were reversed with the administration of the drug decadron.

The Chinese drug Compound Q--and its American counterpart, GLQ223, made by a Redwood City, Calif.-based company called Genelabs--have been mired in controversy since Dr. Michael McGrath published a paper in April, 1989, reporting that GLQ223 killed certain cells infected with the human immunodeficiency virus in test-tube experiments.

However, at least five other laboratories, using various viral strains and different culturing and assaying techniques, have been unable to demonstrate antiviral activity. McGrath, a UC San Francisco researcher said in a presentation here that he believes he succeeded where others failed because he performed his experiment in Teflon vessels rather than the plastic dishes typically used by researchers. McGrath said the Teflon test-tubes best approximate conditions in the human body, though other researchers remain skeptical.

“There are a lot of different assay systems and it is an awfully complex situation,” said Jeffrey Lifson, Genelabs vice president for research. “The ultimately bio-assay is going to be the patients.”

Researchers from UC San Francisco today will report the first patient data from their Phase 1 safety trial of GLQ223. Their preliminary findings showed no significant change of HIV infection but that the drug warranted further study.

Some of the 18 patients, especially those receiving higher doses, had flu-like side effects.