Neurology Funding Good News: Activists' NIH Study Pays Off

Intense behind the scenes negotiations between AIDS activists in New
York and San Francisco and the National Institute of Neurological
Disorders and Stroke (NINDS) over the past year have paid off with a
grant budget between one million and three million dollars larger than
last year's NINDS research budget devoted to studying the neurological
impact of AIDS. While the amount may not seem like much in comparison
with overall Federal research spending, in the field of neurology it
is a desperately needed infusion of cash. The new funds will go to
research in the seriously underfunded area of AIDS complications in the
central nervous system such as AIDS dementia, peripheral neuropathy,
and PML -- progressive multifocal leukoencephalopathy, an opportunistic
infection of the brain that may affect as many as five percent of
people with AIDS.
"It is fabulous," said Derek Link of the New York based Treatment
Action Group (TAG), one of the activists who were instrumental in
helping to develop the new program. "It is more money for AIDS
research. It is money for a neglected area of AIDS research and it will
increase the efficiency of research." [Derek Link is one of the authors
of the in-depth report on NIH, reviewed in the article above.]
One example of the benefits of the additional funding is that more
sophisticated studies can be undertaken. To study peripheral neuropathy
it is essential to have both a neurologist and complex and expensive
nerve conduction data and analyses to get objective results on the
efficacy and toxicity of drugs.
And PML studies are likely to need protocols that use potentially
highly toxic drugs in an inpatient setting with not only a neurologist
but study nurses as well. In both cases, such studies have usually been
impossible within the ACTG neurological sites.
Neurology has been called the "ugly duckling" of HIV research --
underfunded, and with few neurologists available, because ACTG
principal investigators have considered neurology as a peripheral
issue, and few have applied for funding or designed protocols that
specifically address neurological implications of HIV and opportunistic
infections. Studies that have been done have often been unsophisticated
due to lack of resources to pay for the advanced testing and
technology required, or because neurologists were not involved in the
early stages of drafting the protocol. Matt Chappell, of ACT UP Golden
Gate, said that of the nine ACTG sites funded in April for neurology,
only four had levels of support that were even nearly adequate. (The
new money will provide up to a million dollars of funding independent
of the ACTG to four ACTG sites.)
It was those problems that drew Link, Chappell, and others into trying
to figure out how neurologists working with HIV disease could find more
research dollars. Derek Link began perusing the budgets of various
federal agencies in an effort to discover any other groups that are
doing neurological research, in the hope that they could be persuaded
to direct some of their funds to HIV studies.
Chappell says they discovered that NINDS had a budget of $16 million
for neurological studies and that the National Institute of Mental
Health had $80 million to do HIV studies. After contacting both
agencies they learned that NINDS was not funded for outreach and
coordination with other NIH agencies. The activists helped facilitate
communication between the NINDS and the neurological committee of the
ACTG.
Researchers have credited ACT UP for its role in making the new funding
possible. According to Joseph Berger, M.D., professor of neurology at
the University of Miami, "There is a move afoot that in no small
measure has been stimulated by ACT UP to make neurological issues a
more important issue." Another leading HIV neurologist noted, "The
involvement of ACT UP and other interest groups has [had] a very
positive influence on many aspects of the established researchers as
they try to put together a response... This is another example of some
bright people who have worked hard and given us an opportunity that is
important."