Thursday, April 23, 2009

Asking for research funds from the Stimulus package

Dr. Raynard Kington
Acting Director
National Institutes of Health
9000 Rockville Pike

Bethesda , Maryland 20892

Dear Dr. Kington:

As members of the Congressional Down Syndrome Caucus and on behalf of the 400,000 individuals with Down syndrome and their families, we are writing to request that you allocate additional fiscal year 2009 funds, as well as a portion of the funding provided to NIH as part of the American Recovery and Reinvestment Act (Public Law 111-5) to meet the short- and long-term objectives of the agency’s strategic plan for Down syndrome.

We support the recommendations of the January 2008 NIH Research Plan for Down Syndrome, and appreciate your agency’s commitment to improving the health of people with Down syndrome. However, we are concerned the resources NIH currently dedicates to Down syndrome research are not sufficient to effectively accomplish the goals set in the plan. In addition, we were hopeful that NIH would include Down syndrome in its documents which listed NIH's "Highest Priority Challenge Topics" for potential grant topics for federal funding through the American Recovery and Reinvestment Act, yet it was not.

In fact, NIH funding for research related to Down syndrome has decreased significantly in recent years, from $23 million in 2003 to $17 million in 2008. With nearly 400,000 people with Down syndrome living in the United States today, this means that only $40 is being committed in research dollars for each person with Down syndrome, far less than the amount of research funding allocated to far less common medical conditions. Since Down syndrome occurs in people of all different races and origins, the lack of funding for research on the condition further contributes to significant health care disparities. Therefore, we believe tripling the NIH funds dedicated to Down syndrome research over the next three years is a reasonable goal for achieving the critical objectives outlined in the strategic plan.

With the allocation of additional funding, there is no shortage of promising research projects, including applications currently pending with NIH, which would help meet the near-term goals of the strategic plan. We understand the Trans-NIH Working Group on Down Syndrome received a two-year project list, based on a survey of nearly two dozen researchers, scientists and other medical professionals. Scientists and medical researchers from well recognized institutions Stanford, Johns Hopkins, and the University of Colorado contributed to the list. Areas of research covered by these projects and applications include:

(1) the pathophysiology of Down syndrome and disease progression;
(2) diagnosis, screening and functional measures;
(3) treatment and management;
(4) research infrastructure; and
(5) living with Down syndrome.

Additional NIH funding is also needed to make research mice more affordable and widely available. As you know, a major impediment to the development of new treatments for people with Down syndrome is the high cost of mouse models that exhibit different subsets of Down syndrome phenotypes. At an initial cost of more than $200 per mouse, research expenses can reach hundreds of thousands of dollars per year, thereby discouraging researchers and promising areas of Down syndrome research. We urge NIH to allocate additional funding to offset the cost of such mice.

Increasing funding for Down syndrome research is critically important not only to people with the condition, but to millions of Americans afflicted with many other conditions. Seizure disorders, Alzheimer’s disease, congenital heart disease, leukemia, diabetes, celiac disease and hypothyroidism are just a few of the medical conditions that more commonly occur in people with Down syndrome. By finding research solutions for people with Down syndrome, millions of Americans without Down syndrome will benefit as well. Further, adults with Down syndrome are less likely to develop many types of solid tumor cancers, including breast cancer, lung cancer, and mouth cancers, in comparison to people who do not have Down syndrome. Further research may unlock the mysteries and new therapies for many human cancers.

We recognize the difficulties in the NIH budget, but with the new federal funding, the scientific support, and the NIH Roadmap, we believe now is an ideal time for NIH to act to fully support Down syndrome research. Significant Down syndrome research has been slowed, and, in some cases, halted, because of the recent lack of research funding. This is particularly acute at a time when increased funding by NIH is needed to advance recent important research discoveries through translational research initiatives to develop effective new therapies for children and adults with Down syndrome. Therefore, we strongly encourage you to use fiscal year 2009 funds and resources available in the American Recovery and Reinvestment Act (Public Law 111-5) to put NIH on path toward tripling the amount of funding dedicated to Down syndrome research, necessary to fully implement the short-term goals outlined in the 2008 NIH Research Plan on Down Syndrome.

Thank you in advance for your consideration. We look forward to your prompt response.


Rep Cathy McMorris Rogers (R, WA)

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