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Legislative Activity

Legislative Activity

Alliance Budget Conferees Letter

November 12, 2013

The Honorable Patty Murray
Senate Budget Committee
624 Dirksen Senate Office Building
Washington, DC 20510

The Honorable Paul Ryan
House Budget Committee
207 Cannon House Office Building
Washington, DC 20515

The Honorable Jeff Sessions
Ranking Member
Senate Budget Committee
624 Dirksen Senate Office Building
Washington, DC 20510

The Honorable Chris Van Hollen
Ranking Member
House Budget Committee
B-71 Cannon House Office Building
Washington, DC 20515

Dear Members of the Budget Conference Committee:

On behalf of the Alliance for Childhood Cancer, thank you for your hard work toward crafting a budget that will promote the priorities and strengths of our country. We recognize the difficult task ahead of you in this challenging economic environment. The Alliance for Childhood Cancer is a coalition of national patient advocacy groups and professional medical and scientific organizations working to promote policies to improve the diagnosis, treatment and survivorship care for children and adolescents with cancer. We are writing to urge you to reverse sequestration in order to protect life-saving research and treatment for America’s children.

The community we represent knows firsthand the promise of life-saving treatments discovered because of research funded by the National Institutes of Health (NIH) and shepherded to market through the Food and Drug Administration’s (FDA) time-tested drug approval process. Unfortunately, we’ve also experienced setbacks when promising research was cut short or limited in scope because of stagnant NIH funding over the last few years. These setbacks were further exacerbated by the $1.5 billion cut to the NIH budget in fiscal year 2013 due to sequestration. Additional sequestration cuts, even below the current continuing resolution, slated to take effect in January if Congress fails to intervene would be detrimental to these agencies.

We must preserve our nation’s medical research infrastructure. Just last year, Congress, on a bipartisan basis improved the drug approval process for rare pediatric cancers, but now sequestration threatens to undermine the potential to use those policy improvements because of its impact on NIH funded research that ultimately goes into drug development. The recent government shutdown brought to the forefront the important work done at the NIH. Many Members of Congress even spoke out on the House floor about the vital importance of medical research and impact of the shutdown specifically felt by the childhood cancer community. News media covered several stories about children being turned away from treatment at NIH’s Clinical Center during the shutdown, providing faces and names to the larger problem that persisted long before the shutdown. Because of sequestration, NIH Clinical Center treated 750 fewer patients and NIH awarded 640 fewer competing research grants.

An estimated 60% of children with cancer are enrolled in clinical trials, which often hold the last possible hope for successful treatment, meaning that cuts to the NIH are especially harmful to the pediatric cancer community. In the short term, these cuts mean fewer patients with access to the high quality of care that NIH provides. In the long term, these cuts amount to loss of progress and hope for life-saving treatments.

A responsible federal budget is one that makes the right investments in our future, including the future for children with cancer and survivors. The Alliance calls on you to work in a bipartisan manner to reverse sequestration and pave a path for stable funding for pediatric cancer research and care.


American Academy of Pediatrics
American Brain Tumor Association
American Cancer Society Cancer Action Network
American Childhood Cancer Organization
American Society of Clinical Oncology
American Society of Pediatric Hematology/Oncology
Association of Pediatric Hematology Oncology Nurses
Association of Pediatric Oncology Social Workers
B+ Foundation
Children’s Cause for Cancer Advocacy
Children’s Oncology Group
Curesearch for Children’s Cancer
Leukemia & Lymphoma Society
National Brain Tumor Society
National Children’s Cancer Society
Pediatric Brain Tumor Foundation
Sarcoma Foundation of America
Society of Pediatric Psychology
St. Baldrick’s Foundation

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