WASHINGTON—Advocacy 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.
