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C IVISIS
by CalTie Wofford
WASHINGTON-Both AIDS activists
and researchers are saying that a meeting
for federal AIDS investigators here the
week of Nov. ·12 was more informative
than the international AIDS conference in
San Francisco last June.
The meeting of the AIDS Clinical
Trials Group, or ACfG, brought together
researchers from 47 medical centers
across the country who are testing anti-
AIDS drugs for the National Institute of
Allergy and Infectious Diseases.
For the first time, activists were
invited to participate both as registered
participants and as members of the newly
fonned Community Constituent Group.
Activists on this committee will SetVe on
all major ACfG committees, induding the
executive committee, according to NIAID.
By contrast, one year ago, activists were
not welcome; four members of ACf UP
barged into dosed meetings, demanding
indusion.
The Community Constituent Group
used its new powers to keep ACf UP
from speaking at a pleruuy session. ACf
UP, planning to point out bureaucratic
problems within the ACfG, charged the
Community Constituent Group with joining
the ACfG bureaucracy and no longer
representing the community's interests,
In a one-page sheet entitled
"What We Have Learned," ACT UP
members outlined their belief that communication
among ACfG committees is
poor,' and statements made in different
sessions were contradictory. Some of
their concerns:
• Drug trials have data backlogs up
to nine months. (Ibis sUlprised members
of the Data Management Commettee.)
.Principal investigators,' or PIs
(researchers who run specific trials), gave
different reports in hallway discussions
24 OUTWEEK Dec........ r S, "11'90
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~,oDrerence
from those they gave in the committee
meetings.
·One PI thought that the number of
participants in a trial he was supervising
was so low that the trial had been cancelled.
He made this statement minutes
after the ACfG committee overseeing
the trial had reported in another session
how high the participation rate was.
~~Nobodytalks
to each other,"
the FDA's Ellen
Cooper told
activists.
According to ACf UP, ACfG committee
members do not discuss trials among
themselves. For example, no PIs sit on
the protocol committee, although site
representatives do .
·Members of a subgroup of the
Primary Infection Committee did not
understand the the basic rules of the
Food and Drug Administration, believing
that any PI could request a drug be put
immediately into phase-one trials--trials
that determine dose and safety of an
agent before it is tested in hundreds of
patients. Actually, it could take three to
ten years to get a drug placed into the
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edited by Paul RykoffColeman
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aIDS a
approval process.
•ACfG trial 076 is a study of AZf in
pregnant women. Both the FDA and ACf
UP have called this trial unethical.
Researchers continue to ignore women's
infections. Pregnant women are given
treatments primarily for their fetuses. For
example, there are no studies of treatments
for vaginal candidiasis, even
though fluconazole was originally developed
in England specially for candidiasis.
Perhaps the most important revelation
about bureaucracy came from highranking
government officials, who say
publidy that they do not cooperate well.
"Nobody talks to each other," the FDA's
Ellen Cooper, in charge of approving
antiviral drugs, told activists.
Rochelle Rollins, research director of
Boston's Multicultural AIDS Coalition and
a Community Constituent Group member,
spoke at the opening plenary session of
the need for activists and researchers to
work together despite the bureaucracy.
She drew an analogy to the movie, The
BreaJ(ast aub, in which high school students
from different social groups learn to
be mends while stuck in detention.T
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loanosls:
There is no cure for HIV. But there are treatment
options. The AIDSIHIV Treatment Directory,
published by the American Foundation for AIDS
Research (AmFAR), is a guide to the full range of
approved and experimental treatments. A one·yeor
subSCription to the Directory (4 issues) is only
$30.00. To subscribe, or to make a contribution,
send your check to AmFAR.
~" American foundation for AIDSResearch
6\(11 ISIS Broadway, New York, NY 10036
People with HIV disease who (onnot ol/ord a paid subscription may
obtain a tomplimentory (Opy by (oiling the Notional AIDS
Informotion Clearinghouse at 1·800'458· 5231.