AIDS experts delayed news of steroid treatment

November 14, 1990|By Gina Kolata | Gina Kolata,New York Times News Service

Treatment with steroid hormones can halve the death rate from the pneumonia that is the leading killer of people with AIDS, a panel of experts has concluded.

But it was five months before the government agency that convened the experts notified doctors who treat AIDS patients of the finding.

And even now, many such doctors say they have not been informed of it.

The disease, pneumocystis carinii pneumonia, attacks people whose immune systems are debilitated.

In the United States, about 40,000 people with acquired immune deficiency syndrome are expected to develop the pneumonia this year; 5 percent to 30 percent of them -- 2,000 to 12,000 people -- will develop respiratory failure, and most of this number will die, according to the National Institute of Allergy and Infectious Diseases.

The expert panel -- 16 AIDS specialists and statisticians -- was convened by the institute last spring to determine whether steroids would be effective in treating the pneumonia.

The panel reached its conclusion May 15 after reviewing five unpublished studies of the treatment, some of whose authors were among the panel's members.

But it delayed announcing its conclusion, a panel official said, because the members could not agree on how to word their statement.

And part of the reason they could not agree was that their papers had not yet been accepted at a prestigious medical TC journal, and theyfeared that an announcement of the finding would jeopardize their publication.

As a result, the institute did not alert doctors to the findings until Oct. 10, when it mailed letters to 2,500 practitioners on a list obtained from Fujisawa Pharmaceuticals Co. of Deerfield, Ill., a concern that makes a drug used to prevent the pneumonia.

The nature of the finding, and the fact that it occurred in May, came to light in the Nov. 2 issue of AIDS Treatment News, a San Francisco-based semimonthly newsletter.

The delay has infuriated some advocates for people with AIDS.

"When the lives of people are in the balance, it is totally unethical not to release information immediately," said Dr. Mathilde Krim, a founder of the American Foundation for AIDS Research, a non-profit group in New York.

Phil Zwickler, who edits the PWA Coalition Newsline, a newsletter written by and for people with AIDS, said the experts who had contributed to the delay were "murderers, murderers in large letters with capitals with an exclamation point."

Dr. Jerome Groopman, an AIDS researcher at the New England Deaconess Hospital in Boston, said the episode showed it was time that researchers, administrators and editors of medical journals together set ground rules for the dissemination of information that could save patients' lives.

"One of the things we're learning from AIDS is that the situation has to change and adapt to all lifesaving situations," he said.

A meeting like one urged by Dr. Groopman is planned for Jan. 15 at the offices of the National Institutes of Health in Bethesda, said Dr. Anthony Fauci, the allergy institute's director.

Even after the institute had sent the letter to doctors, it did not announce the findings, which have gained little public attention.

Even some doctors who treat large numbers of AIDS patients said they were not aware of it.

Two of the five papers and the consensus statement will appear in the New England Journal of Medicine on Nov. 22.

Mary Jane Walker, a spokeswoman for the National Institute of Allergy and Infectious Diseases, said the institute had chosen not to notify the press of the steroid recommendations because the New England Journal of Medicine, like other leading medical journals, has a policy against publishing studies that have been previously described in the press.

The policy is an effort to ensure that new medical findings appear first in a reputable professional journal.

But Dr. Arnold Relman, editor of the journal, has said in the past that announcing lifesaving information would not preclude its publication later in the journal.

In response to a reporter's request late last week, the journal declinedto send out advance copies of the papers, saying they were not available.

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