Peptide T Unavailable in Buyers' Clubs

An estimated 3,000 people have been cut off from access to
peptide T, as buyers' clubs across the U.S. have been unable
to get supplies. Peptide T, which has been in development for
many years (AIDS TREATMENT NEWS first covered it in issue
#22, January 16, 1987; it had already been tested in humans
at that time) is not formally approved, but is used to treat
AIDS-related neurological problems, especially painful
neuropathy and cognitive disorders. Peptide T is believed to
be entirely safe.

The immediate cause of the cutoff is that the European
supplier decided not to sell it any more to the U.S. buyers'
clubs. The drug may be available through other sources, but
none has yet been found.

Peptide T access was also cut off a year and a half ago, as
covered in AIDS TREATMENT NEWS #119, January 18, 1991. That
instance was precipitated by the beginning of a new round of
clinical trials, which brought peptide T under a different
legal framework and under a different bureaucracy within the
FDA.

We do not know why the recent problem occurred. It may have
been because of fear of the FDA, but without any specific
action by the FDA. On May 25th of this year, AIDS TREATMENT
NEWS was called by a New York law firm representing an
unidentified European pharmaceutical company which had new-
drug applications before the FDA. The company was worried
that, either because of the new presidential administration
or otherwise, the FDA might have changed its attitude toward
buyers' clubs, and might retaliate against the company for
its former sales to them. We do not know if this call was
relevant to peptide T, or concerned other drugs.

Note: ACT UP/Golden Gate mentioned the peptide T supply
problem in its July 1993 newsletter, Treatment Agenda, in the
context of a survey designed and conducted by ACT UP/Golden
Gate on the effects of d4T. D4T can cause peripheral
neuropathy in some patients. ACT UP/Golden Gate has heard a
number of reports of peptide T providing relief from the
pain, but not the numbness, associated with neuropathy
apparently caused by d4T. The organization also heard at
least two reports of peptide T failing to provide relief in
this situation; it is not known if these people had a
different kind of neuropathy, however. ACT UP and others are
continuing to investigate the latest peptide T cutoff.

For a copy of the newsletter, mail a request for the July
Treatment Agenda, together with a self-addressed stamped
envelope, to: ACT UP/Golden Gate, 519 Castro Street, Box #M-
93, San Francisco, CA 94114.

What You Can Do

It looks as though peptide T will not be available for some
time, as the underground has yet to find other secure
sources. In the meantime, the PWA Health Group, a New York
buyers' club, is collecting names and numbers of people with
AIDS, their doctors, and others concerned, in order to
prepare for a concerted community campaign to secure
equitable access through some form of expanded access
program. For more information, or if you can help, call the
PWA Health Group at 212/255-0520.