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ADA Diabetes Advocacy update
April 24, 1998

Thank you to everyone who sent me a copy of their email to Dr. Harold Varmus. We heard that more than 100 people emailed Dr. Varmus and expressed their concern at his comments on diabetes research funding!

The fact is that between 1987-97, the NIH budget increased 100% while the diabetes research budget increased 35%. During this time, diabetes research didn't even keep pace with inflation. As a result of inflation, NIH spent more on diabetes research in 1987 than in 1997.

On April 15, Dr. Varmus responded. In a letter to the American Diabetes Association, he offered examples of recent NIH diabetes initiatives as proof that NIH has made diabetes a priority. (To receive the letter, please email me your fax number).

ADA quickly responded. Our letter stands by our past comments that diabetes hasn't been a priority to NIH. It also applauds the recent diabetes initiatives at NIH, but states that the NIH diabetes research budget should be $1 billion a year instead of its current $349 million. The letter states that increasing funding to $1 billion a year can be achieved in "just a few years."

The letter closes by saying that "until, and unless, you can 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 [of $1 billion a year]."

What does all this mean? It means that the American Diabetes Association is going to fight until NIH spends $1 billion a year on diabetes research. It means that you should be prepared to fight too. We've already seen what vocal advocates for other diseases have accomplished. We must continue to do the same for diabetes.

Advocacy works. The American Diabetes Association has proven that. Because of our advocacy efforts, we secured $2.1 billion more in Medicare benefits for people with diabetes, we enacted 26 state laws improving your health insurance coverage and we won two lawsuits that protect children with diabetes in 2000+ daycare centers.

We will do the same for diabetes research. In fact, we've already started to have an impact. In the last two years, diabetes advocacy has reversed the decade long decline in diabetes research funding at NIH. In 1998, diabetes research received a larger increase in funding than NIH overall for the first time in 11 years. It's not a coincidence.

Clearly we're making a difference, but we have a long way to go. NIH has taken some steps forward, but it is far cry from spending the $1 billion a year needed to make finding a cure for diabetes a national priority.

If we stick together, and raise our voices together, we'll win. Please keep up the pressure on NIH and Congress to make finding a cure for diabetes a national priority. Next week, I'll fill you in on what diabetes advocates are doing to convince Congress to make diabetes a national priority.

As always, please email your comments, questions and concerns to me. Many thanks for your continued support.

Joe LaMountain
National Director of Advocacy
American Diabetes Association
1660 Duke Street
Alexandria, VA 22314
(f) 703-549-8748

Text of the Letter from the ADA to Harold Varmus, MD
Director of the National Institutes of Health

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 and 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 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.


Stephen J. Satalino
Chair of the Board

cc: Phillip Gorden, MD

Posted 24 April 1998

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