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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.

Continued...

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."

Lobbyist Terry Lierman said, "The goal of research is to die young as late in life as possible."

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
The panel included (from l) 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.

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.

Fran Visco heads the National Breast Cancer Coalition.

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."

ASCO founder Dr. John Durant

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.

OD's Diane Wax says her job description is simple: "I try to keep bad things from happening."

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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