Posted by Al Gordon on May 01, 1998 at 21:33:04:
As you may have read in the report on Institute of Medicine Committee on the NIH Research Priority-Setting Process on April 3, 1998, Mayer Davidson of the American Diabetes Association (ADA) gave testimony that was quite forthright in its challenge of NIH funding of diabetes research. ADA have continuously said that diabetes is not a high priority for NIH. I have attached an interchange of letters between Stephen Satalino (Chairman of ADA) and Harold Varmus (Director of NIH). As you will see, ADA's challenge is solely about the level of funding, not about the choice of research priorities. If they were extending the challenge to also deal with the ineffective research priorities of the NIH, the challenge would be complete. However, the challenge is strong and direct, and ADA deserve considerable credit. Here are the letters:
April 15, 1998
National Institutes of Health
Bethesda, Maryland 20892
Stephen J. Satalino
Chairman of the Board
American Diabetes Association
1660 Duke Street
Alexandria, Virginia 22314
Dear Mr. Satalino:
Recently, I have received several electronic mail communications from members of the American Diabetes Association. These messages express distress, disappointment, and even anger with the National Institutes of Health. They apparently result from a statement, attributed to the American Diabetes Association, which reported negatively on comments I made at a recent congressional hearing about NIH funding of diabetes research.
I was very concerned by the dismay that these diabetes patients and their families expressed, and I asked my staff to locate the referenced ADA statement. From what we can reconstruct, we believe the patients are referring to a memorandum that the National Director of Advocacy for the ADA widely distributed on Friday, April 10, 1998. The memorandum provides commentary on a congressional hearing on "New Developments in Medical Research: NIH and Patient Groups," at which I testified on March 26, 1998, before the House Subcommittee on Health and the Environment. Although this appears to be an ADA-generated document, I have been informed that it was not sponsored by the ADA organization.
When I read this memorandum, I could well understand and empathize with the sense of frustration and pain all diabetes patients would feel at seeing the heading, 'NIH Declares: Diabetes Note a Priority." This theme continues throughout the memorandum, in which negative commentary about NIH diabetes research efforts is interspersed with the selective use of quotes taken out of context from my testimony. The memorandum urges recipients to send me their comments.
The selective use of quotes in the memorandum creates the misleading and erroneous impression that the NIH is not supportive of diabetes research, and that this is a long-standing policy decision. I believe this is a serious misrepresentation of the NIH and of my testimony. As with all statements I make in congressional hearings and other public appearances, my testimony stands for itself. I urge you and other members of the ADA leadership and membership to read my testimony in its entirety. I think you will find that it is supportive of diabetes research and of the diabetes community generally.
We are at a time when the scientific opportunities and resource base in diabetes research have never been greater. I believe we should all be working together to capitalize fully and productively on this unprecedented situation, and on the promise it offers to diabetes patients and their families. This year, for example, we have issued seven new research solicitations to increase momentum in the diabetes field. The scientific impetus for these initiatives was a trans-NIH symposium, which I sponsored last September with the National Institute of Diabetes and Digestive and Kidney Diseases, along with eight other participating Institutes. We have an active trans-NIH Diabetes Advisory Group, comprising the leadership of these Institutes - augmented by external scientific experts - to continue monitoring the development of several of these initiatives. To help guide the longer-term development of our diabetes programs, we have established the Diabetes Research Working Group to develop a comprehensive plan for all NIH-funded diabetes research. We will be sending this plan to the Congress within the coming year.
One current area of research focus is the pathogenesis and therapy of the complications of diabetes, including kidney and urologic complications. We are also expanding research efforts to understand the cell biology of the beta cell and the immunopathogenesis of Type 1 diabetes, as well as to develop new cellular and molecular approaches to achieving euglycemia. In addition, we are in the process of conducting two important primary prevention trials in diabetes. We will shortly launch a new National Diabetes Education Program to disseminate the important prevention message about the positive effects of blood glucose control, as demonstrated in our Diabetes Control and Complications Trial.
With respect to funding, we are very pleased that a major feature of the FY 1999 President's Budget Request is a trans-NIH Diabetes Research Initiative totaling nearly $415 million. These funds will enable us to pursue the most meritorious scientific concepts and proposals recommended to us by the diabetes community - including our ad hoc scientific advisors, peer review groups, and voluntary health organizations.
I believe we are on an important threshold for diabetes research and that our next steps will be positive ones - capitalizing on new technologies and making clinical strides. The NIH and its many scientists care deeply about diabetes patients. I would like to convey to all of them the enthusiasm and momentum that infuse the diabetes research enterprise today, rather than the inappropriately negative message in the memorandum that has triggered my recent electronic mail.
Sincerely,
Harold Varmus, M.D. Director
American
Diabetes
Association
April 20, 1998
Harold Varmus, MD
Director, National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892
Dear Dr. Varmus:
Thank you for your letter of April 15, 1998. We appreciate the beginning of a fruitful dialogue on the future state of diabetes research funded by NIH.
While we applaud and are greatly pleased about the new diabetes initiatives at NIH, we still maintain our position that diabetes research has not received its appropriate share of support. Between 1987-97, the NIH budget grew about 100%, but the diabetes research budget grew just 35%. In addition, while the diabetes budget grew 35%, medical inflation grew 48%. Therefore, in real dollars, NIH spent more on diabetes research in 1987 than in 1997. These figures do not suggest that diabetes research has been an NIH priority.
Since we cannot change the past and must look to the future, the recent diabetes initiatives provide a hint that funding for diabetes research may be on the upswing. The search for a cure and preventive for diabetes must become a national priority, similar to the resources provided to prevent and cure other high-impact diseases. As we both know, a great infusion of money into a sparsely studied (or non-existent) subject of research will attract scores of scientists who are in other disciplines (e.g., as occurred with AIDS research).
Consequently, the American Diabetes Association believes the current diabetes research budget at NIH should be $1 billion a year. Given the tremendous human and financial toll of diabetes, and given your own published criteria for prioritizing research spending, and the broad bipartisan support for diabetes an medical research in Congress, we believe this target can be achieved in just a few years.
As you correctly state in your letter, "we are at a time when the scientific opportunities…in diabetes have never been greater," and that we are on "an important threshold for diabetes research." We wholeheartedly agree. However, without a major infusion of money in NIH funding for diabetes research, these historic opportunities will be missed. Single-digit or low double-digit increases are not satisfactory. Until, and unless, you can personally convince us that our point of view or approach to the problem is misguided, we will continue to rally Congress and the public to fund diabetes research at our target goal.
To continue our dialogue, we would still appreciate the opportunity to meet with you to discuss this issue. If NIH and the advocacy groups are to have a fruitful partnership, which you have repeatedly said is important, than periodic in-person meetings to more fully discuss our respective positions are warranted. We look forward to meeting with you soon.
Sincerely,
Stephen J. Satalino
Chair of the Board
Cc: Phillip Gorden, MD