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.
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.
Another problem is a bias of advocacy groups toward funding research into less lethal diseases and away from diseases with high mortality or diseases that are relatively rare. "Survivors have passion; they are really good lobbyists," he said. "People with lung cancer tend to die, and they can’t come back and lobby."
First in the World
The United States ranks first in the world in the percentage of its gross domestic product that it devotes to health research and development (R&D), and not simply because it is the wealthiest nation. Two major factors explain this fact, Dr. Cook-Deegan argued.
First, the United States does not have a central ministry of research. "It’s a complicated system and much less predictable than others systems" for allotting research dollars, he said. "But when you want to boost the budget for health research, you don’t have to directly take money away from high-energy physics, or engineering, or some other R&D pot, which you do if you are under a central research minister."
Also, the Congress has an unusual degree of autonomy among national legislatures in determining how much money will go to finance research. "Congress really does have the power of the purse, and biomedical research is popular in both parties," Dr. Cook-Deegan said.
Nonetheless, many areas of research in the United States, particularly engineering, mathematics, and the physical sciences, suffer in comparison to the money Congress provides to biomedical scientists. Mr. Porter explained this disparity as a result of how House appropriation subcommittees are organized.
"The life sciences are in one subcommittee, where they are a major portion of that subcommittee’s funding priorities," he said. "The physical sciences tend to be in other subcommittees where they are not a major portion of the subcommittee’s funding priorities. These subcommittees don’t have the same kind of pressure to increase funding for these sciences, and the physical sciences don’t have the same kind of advocacy groups to help get the increases that you have had in the life sciences."
Change in the Government Role
Prior to the late 1950s, government support for biomedical research was small, said Dr. Cook-Deegan, who is writing a book about the funding process for biomedical research.
"It wasn’t a huge enterprise; it was done by hospitals and philanthropists," he added. For example, polio research and the development and deployment of the polio vaccine were mostly funded by the Foundation for Infantile Paralysis, later renamed the March of Dimes. "The federal government was there near the end, but, for the most part, it was a private philanthropic effort," Dr. Cook-Deegan said.
The role of government changed in large part because of Mary Lasker, the wife of a wealthy public relations and advertising executive, who began pushing the Cancer Foundation, now named the American Cancer Society, into funding research. Then, with her friend
Florence Mahoney, she started lobbying for an increase in federal funds to support cancer studies.
"Mrs. Lasker realized that Congress was the place to extract dollars from the federal government to fund medical research," Dr. Cook-Deegan said. "Most of us would say she is the person most responsible for creating a political strategy that has proven to be quite robust for 5 decades."
Mrs. Lasker remained a powerful influence for several decades in the legislative battles to fund biomedical research, and many other advocates learned from her and took their cases to Congress.
Today, however, the lobbying pattern is different from even a decade ago. "We no longer have a Mary Lasker and a Florence Mahoney at the top of a very narrow pyramid," Dr. Cook-Deegan said. "What you have is coalitions of disease advocacy groups. Those are the political actors now, as opposed to individuals and single-disease organizations."