I was doing some web searching yesterday, trying to
find some information on NIH funding and came across the
following article about patient advocacy from the "NIH Record."
This is a biweekly newsletter for employees of NIH (it's
circulation is 17,000). The website address is:
http://www.nih.gov/news/NIH-Record/archives.htm
The article is long, so I'm sending it in 2 parts. (BTW it
includes a statement that "virtually all copy is generated from
within NIH. Its contents are reproducible without permission")
While I found some of this article to be untrue and
offensive (i.e. see comment in part 2 about "Parkinson's
fighting ALS") I think it could be useful for us to know
the viewpoints of NIH employees about our advocacy efforts.
There's also some good information from other patient
sdvocacy groups, that have been successful in winning
increases in research funding.
Linda Herman
---------------------------------------------------------------
NIH Record 4-21-98
Who Has Clout in Budget Bouts?
Advocacy Groups Learn How To Waltz with NIH
By Rich McManus
On the Front Page...
Some of the biggest, savviest players in the game of winning
more funding for health research visited the Natcher Bldg.
recently for a STEP module on "Advocacy Groups: Partners in
Research." No one made a bigger splash than closing speaker
Sam Donaldson, the ABC-TV White House correspondent who
dropped in late in the day to embody a megawatt sermon on
grabbing attention for your cause by being wildly
entertaining (a notion seconded by an ACT UP founder on the
program who boasted "I helped take over this campus once.").
Money may make Capitol Hill go 'round, suggested a chorus of
speakers, but it tends to dog the trail of tears and
laughter.
There is no shame in scientists' descent from the ivory
tower to pitch a story to the press, Donaldson declared. "Do not
let your light be hidden under a basket. It is not beneath
you to be originators, to come to us and say, "Have I got a
story for you!," he boomed. "Don't be reluctant to drop your
scientific mien. I'd rather be full of cash for medical
research and be accused of being 'popular,' than be poor and
pristine."
Treated successfully for melanoma at the Clinical Center a
few years ago, Donaldson called himself an alumnus of NCI and
thundered, "I don't want to see (Surgery Branch Chief Steve)
Rosenberg out at the synagogue, or eating at a restaurant on
a Tuesday night -- get back to the lab!"
Another speaker, Mike Stephens, who for 21 years served on
the staff of the Senate appropriations committee overseeing
NIH's budget (and who now lobbies on behalf of the Federation
of American Societies of Experimental Biology) said "the most
powerful thing [in influencing Congress] is patient advocacy.
I routinely teared up at 21 years worth of hearings. Putting
a human face on a disease is enormously powerful...it's not
the analytic that's persuasive, but believing in a
humanitarian cause."
Speaker Terry Lierman, another Hill lobbyist who once
worked at NIH and was a management intern, illustrated the
importance of evoking emotion with a vignette from his days
as a staffer to Sen. Warren Grant Magnuson: "Sen. Magnuson
once very gently explained to Ruth (Kirschstein, now NIH
deputy director but then director of the National Institute
of General Medical Sciences), 'No one ever died of general
medical sciences.'"
Capable of adopting as ferocious a game face as any coach,
Lierman insisted that advocates for medical research display
passion for their causes. "It's the people who put a face on
the disease who are effective," he declared. "This isn't some
9 to 4 job, though I'm afraid that's what it's becoming for a
lot of people."
Like a coach, he was given to aphorism: "Followup is the
chariot of genius. More in politics than in anything else,
it's the essence of being successful."
Session moderator Diane Wax, director of NIH's Office of
Legislative Policy and Analysis (and an MI from Lierman's
year, 1971), said Sen. Mark O. Hatfield, namesake of the new
Clinical Research Center being built in front of Bldg. 10,
once told her and NIH director Dr. Harold Varmus that "'When
voters visit their representatives in their district offices,
it's the most effective form of advocacy because the member
[of Congress] thinks of that person as his or her voting
constituency.'"
The panel included AIDS activist David Barr, lobbyist Michael
Stephens, Sue Levi-Pearl of the Tourette Syndrome Association,
Fran Visco of NBCC and Mary Woolley of Research!America.
