Originally published in Synapse on November 11, 1985.
Two weeks ago, French researchers reported “dramatic biological improvements” in a group of AIDS patients using a new drug treatment.
After a major press conference, the news was immediately transmitted worldwide. Following one week of testing the drug cyclosporin on six patients, the French doctors said they saw “dramatic slowing of the disease’s progress in one patient and a complete halt in another,” according to a report in the San Francisco Chronicle.
They made the results public, they said, for ethical reasons.
Locally, the San Francisco General Hospital AIDS clinic was swamped with patients asking about the drug.
U.S. experts quickly denounced the report as premature, outrageous and unethical because there was so little supporting data.
Even other French scientists said the announcement was based on “lousy scientific method.”
Dr. Harold Varmus, professor of microbiology and an expert on viruses, said “the issue is a social and moral one. [The announcement could] create false hope with a drug that could be toxic.”
Varmus warned that this could lead to a situation where false positives in the cyclosporine trials “could assign many patients to a potentially harmful treatment.” Varmus called the early announcement “misdirected good-heartedness or even lust for the limelight.”
French and U.S. scientists have sharply competitive over AIDS since the disease was recognized. Observers believe this reflects a more general state of affairs — publicity is used to gain funding in an era of increasing competition for financial support.
This hunger for publicity may be increased by the extensive media coverage of AIDS.
“I haven’t noticed any particular surge of interest in cyclosporine among AIDS patients,” said Charles Harrington of the Shanti Project, which serves many AIDS victims and their loved ones. “Most don’t run after cure-alls ... there is much more interest in two other experimental drugs undergoing tests, isoprinosine and ribavirin.”
Harrington added that these drugs are being tested at SFGH, and a few patients go to Mexico for self-medication.
The drugs are freely available there, but illegal here except for experimental purposes. At SFGH, the study group receives low doses, because side effects are unknown — although most subjects feel the drugs are helping, he said.
The use of cyclosporine is paradoxical, because it is used in organ transplants to prevent rejection by suppressing the immune response.
William Amend, a UCSF kidney transplant surgeon, said he “can’t understand the rationale of using cyclosporine in AIDS patients, because it down-regulates the T-helper cells,” which are key to immune response.
The French doctors believe suppressing the immune system, even temporarily, will check the virus invasion because the bone marrow produces a new population of uninfected cells the virus could not invade.
In a recent update, one doctor announced that a patient who had been near death a month ago has gone home and has a normal count of T-helper cells.
After an initial period of illness, however, AIDS patients frequently experience dramatic improvement for about six months, then die quickly.
One of the French physicians, Philippe Even of the Laennec Hospital in Paris, announced that the third of the patients treated with cyclosporine died on Nov. 9.
Evan, according to the Associated Press, said it is “absolutely inevitable that a certain number of the more gravely ill patients ... treated too late would die.”
