America Living With AIDS

A M E R ICA Living

therapies for conditions for which
there is no standard therapy or for
patients who have failed or are intolerant of standard therapy.
DISSEMINATING INFORMATION
CONCERNING RESEARCH
A repeated concern of people with
HIV disease about AIDS drug trials
has been delay in getting information
about promising new drugs to physicians and their patients in need.
There are a number of possible venues
for the release of information about
potential breakthroughs in treating
HIV disease. Peer-reviewed journal
articles have a major advantage over
most of the alternative means of distributing information, especially the
"science by press release" process.
Side effects, numbers of subjects,
study design, and potentially important caveats are usually overlooked
when "breakthroughs" are announced.
However, some researchers have withheld critical data while awaiting acceptance for publication in peer-reviewed
medical journals. A number of journals follow the "Ingelfinger rule"
(named after a former editor of the
prestigious New England Journal of
Medicine) enforcing a news embargo
during consideration of articles and
prior to publication of research
results. However, in the context of the
HIV epidemic many journals have
amended that policy and now recognize exceptions for information of
urgent importance to the public
health.
The main problem with journal
publication of important findings

about treatment for HIV disease,
including zidovudine (AZT),
aerosolized pentamidine, and corticosteroids, is that publication has lagged
as many as nine months behind less
conventional communications such as
press conferences, press releases, or
abstracts presented at scientific conferences. This delay is difficult to understand for people whose survival may
be measured in months or a few years.
A number of solutions have been
proposed, including: revising the
timelines for submitting, reviewing,
and accepting articles in peerreviewed publications; making articles
available on-line as soon as they are
accepted (even prior to actual publication); and encouraging a standard format for release of information to the
press.
There is a significant role for federal agencies to play in disseminating
information about promising new
treatments for HIV disease. Each of
the following groups has an important
role to play: the National Cancer
Institute (which administers the
Physician Data Query Service), FDA
(which publishes the FDA Drug Bulletin and places columns in a number
of leading medical journals), the
National Library of Medicine, the
Health Resources and Services Administration (which funds the AIDS Education and Training Centers' program
to educate health care providers about

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