Part 2: "Who Has Clout in Budget Bouts?" from the NIH Record
Laughter and tears were tremendously effective weapons for
the AIDS Coalition to Unleash Power (ACT UP), one of whose
founders, David Barr, spoke about media savvy and street
theatre as ways of turning "deaf ears" at FDA and NIH into
seats at the tables of power.
Almost as forceful a speaker as Donaldson, Barr, a lawyer who
helped found the Gay Men's Health Crisis in New York City,
told a coming-of-age tale that began with the tantrums of
youth (including the May 21, 1990, demonstration at NIH), and
continued through the brashness of demanding quick access to
unproven therapies (which, he conceded, turned out to be a
disaster) to his current state: a hunger for good data that
would rival that of any driven AIDS researcher.
"We've come a long way when a patient advocate can head a
group (he directs the Forum for Collaborative AIDS Research)
composed of drug companies and federal researchers," he
joked.
Barr called pentamidine therapy for Pneumocystis carinii
pneumonia the most useful breakthrough for AIDS sufferers
since the discovery of HIV. "To hell with protease
inhibitors," he said, "PCP prophylaxis has done far more to
save lives."
Skill at attention-getting -- he recounted protests on Wall
Street about the price of AZT and drama on the unlikely stage
of the Parklawn Bldg. grounds -- earned activists seats on
community constituent groups (CCGs), where "patients play a
direct role in setting priorities for protocols," he said.
"If patients are at the table, it will make for better
research," Barr said, emphasizing that CCG members are
well-informed, not "tokens."
He concluded with a plea for more clinical research, and more
long-term clinical data. "I need good data more than anyone
else," he said, sounding more like a convert to bench science
than a provocateur.
Though there's nothing like having a Christopher Reeve as
your spokesman (NIH's Wax called the actor "a magnificent
advocate for spinal cord injury -- stars have great influence
on the Hill"), another approach combines boardroom savvy with
a willingness to throw rocks. "We believe we have been
successful at both," said Fran Visco, president of the
National Breast Cancer Coalition since the group began in
1991. A former antiwar activist from the sixties who later
joined the "establishment" as a corporate lawyer in
Philadelphia, she was diagnosed with breast cancer in 1987 at
the age of 38, with a 14-month-old child. The diagnosis
returned her to a life of activism. Unlike the other
advocates, however, she is loathe to rely on her personal
crisis as a motive for action. "At (funding) decision time,
we want to be at the table with informed opinion, not my
personal story. My own experience is not important in this
context."
Just as scientists have little use for anecdote, Visco,
adopting the stringency of a corporate boardroom/lab bench
hybrid, relies solely on being so thoroughly versed in the
latest data on cancer, and so intimately acquainted with the
needs of breast cancer patients that scientists would be
foolish not to seek NBCC's input when designing clinical
trials. "We're partners and collaborators with research
scientists," she stated. "We can help design research
protocols and proposals. We really do know what we're talking
about -- we don't just bang the table and scream. We consider
ourselves responsible activists."
Active is the right word -- NBCC is composed of some 432
organizations around the country, claims 52,000 members, runs
an array of intensive training programs, holds its own
hearings on cancer funding (the "$300 Million More" campaign
went cross country to Capitol Hill to garner funds for breast
cancer research from the Department of Defense -- talking
tough, Visco said NBCC will "never forgive nor forget" those
who opposed this effort), and is gaining respect from such
bodies as the American Association of Cancer Research, Visco
said. Another speaker on the program, Dr. John Durant,
president of Fox Chase Cancer Center in Philadelphia and a
founder of the American Society for Clinical Oncology, said
NBCC members "were very helpful contributors" in DoD
peer-review sessions: "They convinced the skeptics in the
group that it works (to have advocates on peer-review
panels), and they got a better quality of review," he said.
Visco charged, "NIH leadership has not embraced the
partnership (with NBCC) to the extent of some individual
scientists and DoD." She claimed that "there are many tables
at NIH around which people give all kinds of advice, and no
action is taken."
Wax countered, "In a way, that may be true," but said NIH is
struggling to review how it sets priorities for research, and
that "we're looking at new ways of opening doors to let
advocates in on the process." NIH, she said, gives advocacy
groups technical assistance -- "we don't lobby, we educate
Congress" -- so that the groups can go lobby on the Hill. She
said NIH director Dr. Harold Varmus, like Lierman's mentor
Mary Woodard Lasker, a famed philanthropist, believes that a
bigger overall NIH budget helps all constituents -- in other
words, a rising tide lifts all boats.
Wax conceded that, even within NIH, NCI has one cancer
fighting another type of cancer. "There are some 600
neurological diseases," she explained, "and we have
Parkinson's fighting ALS (Lou Gehrig's disease). They all
want to see more dollars, more program announcements, more
RFAs, and earmarks."
She concluded, "NIH couldn't do what it does without
advocates. Dr. Varmus always thanks these groups when he
speaks to them. You should talk to your program people and
bench scientists," she counseled the audience, composed
mainly of extramural NIH'ers, "and get them excited about
research, and not just at NIH.
"Each member of Congress has some health issue --
we all age, some get heart disease, others get cancer or
diabetes. There's a built-in advocacy."
Wax said NIH's partnerships with myriad advocacy groups
have Congress seriously considering eight bills to double NIH's
budget. "NIH will have (the advocates) to thank if it happens."
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