Johns Hopkins Gazette: September 25, 1995

Panelists Put Breast Cancer Funding Into Political Focus

Cynthia Salter
Special to The Gazette

     Breast cancer survivors have achieved an unprecedented
influence in decision making about scientific research and
federal funding over the past 10 years. Through focused
grassroots activism and continued lobbying in Washington, D.C.,
advocates have placed breast cancer high on the public agenda and
set an example for other advocacy groups attempting to draw
attention and funding to their causes. Much work remains to be
done, however, to spread the benefits of this advocacy to
minority and low-education women.

     Questions about the interplay among grassroots advocacy,
politics and science were raised and discussed last Tuesday at a
symposium sponsored by the Institute for Women's Health Research
and Policy at the School of Hygiene and Public Health. 

     The institute is a group of faculty from various School of
Public Health departments whose mission is to improve the health
of women by conducting scholarly research on women's health,
communicating research results to the scientific and public
health community and to the general public, and applying 
research results to health services delivery and public policy.
Connie Nathanson, professor in the Department of Population
Dynamics, was the moderator.

     Three speakers, with roots in various federal government
agencies, described the history and current realities of breast
cancer, which strikes roughly 182,000 women in the United States
and kills 46,000.

     Suzanne G. Haynes, assistant director for science with the
Office on Women's Health at the U.S. Department of Health and
Human Services, outlined the history of the National Action Plan
on Breast Cancer formed in 1993 after petitions containing 2.6
million signatures were presented to newly elected President Bill
Clinton.  Because the NAPBC, which received $10 million in
federal funding to finance breast cancer research, wanted to
encourage public-private collaboration, grant applicants were
required to work with advocacy and consumer groups.  Each group
reviewing applications included two breast cancer survivors.

     "That was a unique idea," Haynes said, "to have the breast
cancer advocates, along with the scientists, decide who got
funded. And they were terrific. They brought in aspects of the
study that the researchers hadn't thought of." 

     The NAPBC funded 99 of the 600 grant applications it
received, the majority in disease etiology, but also many in
information dissemination and consumer involvement and advocacy.

     But bringing research scientists and breast cancer survivors
together was not always easy.

     "I guess if there was anyone there at the National Cancer
Institute supportive of advocates, it's me," Haynes said. "But
it's tough to work with advocacy groups; it's a tough interplay.
Advocates need to be angry, fighting for something they believe
in. So here always is a built-in tension. But it's still good
science," she emphasized.

      Larry Kessler, director of the Office of Surveillance and
Biometrics at the Center for Devices and Radiological Health at
the U.S. Food and Drug Administration, which is focused on breast
cancer screening and mammogram use, pointed out that such
response is new for many scientists.

     "I don't think that scientists have been made to listen to
their constituents before," he said. "But that circle is
valuable. There must be tension for it to succeed. But if there's
communication, it will be productive." 

     Kathleen Muzdakis, senior legislative assistant for
Congresswoman Louise Slaughter, described the battle fought by
the Congressional Caucus on Women's Issues to ensure that
federally funded health research broaden its male focus to
include women's health issues, cautioned that even the success of 
advocacy itself can become a political tool. 

     "Breast cancer advocacy presents a striking example of  how
to cut through to focus on one issue," she said. "But it can be
used by many different sides for reasons that are not always for
advancing women's health. Breast cancer is now a
non-controversial issue used by some men politicians to appear to
be pro-woman, without supporting women on other issues."

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