(ATN) Pneumocystis Steroid Controversy

(ATN) Pneumocystis Steroid Controversy

AIDS TREATMENT NEWS No. 115 - November 27, 1990
John S. James

On November 14 The New York Times published a front-page story alleging that news of a consensus panel's recommendation for using steroids in treating certain cases of pneumocystis had been delayed for five months, in part because researchers feared that announcing the information earlier would jeopardize publication of their results in prestigious medical journals. Much press and television coverage followed; The New York Times published a followup story on November 16, and a brief note on November 18 ("The Week In Review" section). AIDS TREATMENT NEWS was credited with bringing this story to public attention; our role, however, was minimal, as everything we reported came from a press release and note to physicians from the U. S. National Institute of Allergy and Infectious Diseases (NIAID). We had refrained from adding any comment of our own, as we were torn between criticizing the delay and praising NIAID for calling the consensus panel in the first place and disseminating the recommendations without waiting for journal publication. In AIDS and in other diseases as well, there is a great need for a respected body to determine when a health emergency exists, call experts together to recommend appropriate changes in the standard of care, and then get the recommendations promptly to the physicians who need them.

There is legitimate concern that some researchers or officials may be blamed unjustly for delaying news of the steroid decision. The consensus panel met in May, and NIAID released the results in October. However, there were serious medical issues concerning the recommendations, issues which could not be resolved in a day. Meanwhile, much of the steroid information was publicly available, having been reported at medical meetings and in some journal articles; in San Francisco, a survey by the Community Consortium found that 67 percent of their physicians who responded had already used steroids in this situation. We are not close enough to this issue to know what, if anything, should have been done differently to disseminate the information more rapidly.

Yet the issues raised by these events are clearly real ones. There are glaring deficiencies in how new medical information is communicated to physicians. Some problems do stem from news embargos imposed by some medical journals; many researchers do not believe the public assurances that these embargos do not apply to AIDS or other emergencies. Other problems occur after publication; for example, there are thousands of journals, and physicians have little time for reading. European journals, for instance, often never come to the attention of the U. S. medical community. The development of professional bodies to cut through the noise and focus on what is most important seems to be hindered by the tendency of such groups to be too conservative (the safest position for guarding against future lawsuits or criticism). All too often the final result is a medical mainstream ignorant of relevant research -- surrounded by mavericks often working on the fringes of respectability. This system poorly serves the public interest.

The recent controversy over steroid use in pneumocystis succeeded where other efforts failed in alerting all physicians to this treatment development. It also made clear that the public will not stand for unnecessary withholding of lifesaving information. And hopefully it will focus professional attention on the larger problems in medical communication, and on how the dissemination of urgent treatment information can be improved.

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