WASHINGTONAdvocacy groups have played a significant role in the thus-far
successful effort to double the National Institutes of Health budget
and will continue to wield important influence in promoting federal funding for
biomedical research, a panel of experts agreed during a media forum.
"There is great pressure from the patient advocacy groups, and there
will be more," said former Rep. John E. Porter (R-Ill), who, for several
congressional sessions, headed the House Appropriations subcommittee that
oversees the NIH budget. "They have become better funded and more
sophisticated. They have hired very fine advocacy personnel, and they are going
to try to impact the budget process."
Mr. Porter, now with the Washington law firm of Hogan & Hartson, spoke
at the forum, sponsored by the National Press Club. The key influence of
advocates lies in talking to members of Congress, particularly those from their
home district, many of whom "have no understanding of how NIH works or how
the funding is accomplished," Mr. Porter said. "They alert their
members to be strong supporters of NIH."
Richard D. Klausner, MD, former director of the National Cancer Institute
and now the bioterrorism advisor to the National Academy of Sciences (NAS), argued that the major impact of disease-specific advocacy groups in
recent years has been their influence in enlarging the total amount of money
devoted to biomedical research.
"The global effect of increasing the overall research budget is the
most profound effect they have on dollars," he said, "much more so
than changing the distribution of dollars among different diseases."
Dr. Klausner noted that advocacy groups influence disease research in ways
other than lobbying for increased funding. Their activities, including
educational efforts, draw attention to their specific disease, which can affect
such things as the availability of tissue resources and, most important, the
desire of researchers to enter the field or expand their work in the disease.
However, Robert Cook-Deegan, MD, of the Kennedy Institute of Ethics, a part
of Georgetown University, noted that the aggressive lobbying by advocates for
specific diseases has its pitfalls as well. "One is that there has been an
incredible proliferation of NIH institutes because each constituency wants to
see its own institute. You can’t keep doing that and have a manageable
enterprise," Dr. Cook-Deegan said.