PNEUMOCYSTIS STEROID CONTROVERSY

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.