APHON Supports the STAR Act and the Childhood Cancer Data Initiative

November 24th, 2020

The Honorable Rosa DeLauro
Chair
Appropriations Subcommittee on Appropriations
Labor, Health and Human Services,
Education, and Related Agencies
United States House of Representatives
Washington, D.C. 20515

The Honorable Roy Blunt
Ranking Member
Subcommittee on
Labor, Health and Human Services,
Education, and Related Agencies
United States Senate
Washington, D.C. 20510

The Honorable Patty Murray
Chair
Appropriations Subcommittee on Appropriations
Labor, Health and Human Services,
Education, and Related Agencies
United States Senate
Washington, D.C. 20510

The Honorable Tom Cole
Ranking Member
Subcommittee on
Labor, Health and Human Services
Education, and Related Agencies
United States House of Representatives
Washington, D.C. 20515

Dear Chairwoman DeLauro, Chairman Blunt and Ranking Members Cole and Murray:

The undersigned childhood cancer organizations, consisting of patient advocacy groups, healthcare professional societies and scientific organizations, represent millions of Americans who care deeply about childhood cancer. We are writing to express our sincere gratitude for the strong support you have provided for childhood cancer funding and medical research at the National Institutes of Health in this year’s (FY) 2021 Labor, Health & Human Services, Education and Related Agencies Appropriations bill.

Childhood Cancer Funding

We are grateful at the strong support that both the House and Senate have provided for childhood cancer funding, especially funding for the Childhood Cancer STAR Act. Each year in the U.S. an estimated 15,780 children are diagnosed with cancer. Approximately 1 in 264 children in the U.S. are diagnosed with cancer before their 20th birthday. Annually there are more than 300,000 children diagnosed with cancer worldwide. Unfortunately, cancer remains the most common cause of death by disease for children in America.

We have made significant advances to develop better treatments for the most common forms of childhood cancer. However, for many other types, progress is limited, and for too many children there is no available cure. Two-thirds of children treated for childhood cancer will suffer longterm effects from treatment including loss of hearing and sight, heart disease, secondary cancers, learning disabilities, infertility and more.

We hope the final funding agreement will include:
● $30 million to fund the initiatives set forth in the Childhood Cancer STAR Act, including $2 million to be awarded to State cancer registries to enhance and expand infrastructure to track cancer in children, adolescents, and young adults.
● $50 million to continue the White House’s Childhood Cancer Data Initiative, which will establish more efficient ways to share and use childhood cancer data.

NIH and NCI Funding

We are extremely pleased that both the Senate and House have provided significant increases in funding to the National Institutes of Health (NIH) and the National Cancer Institute (NCI).

We join with the leading national cancer organizations in requesting that you provide the largest possible increase in the final appropriations agreement.

Many thanks for the tremendous support you have shown and continue to show for children and their families who are fighting cancer.

Sincerely,

The Alliance for Childhood Cancer
American Association for Cancer Research
American Cancer Society Cancer Action Network
American Childhood Cancer Organization
American Society of Pediatric Hematology/Oncology
Andrew McDonough B+ Foundation
Association for Clinical Oncology
Association of Pediatric Hematology/Oncology Nurses
Association of Pediatric Oncology Social Workers
Children’s Brain Tumor Foundation
Children’s Cancer Cause
Children’s Oncology Group
CureSearch for Children’s Cancer
Leukemia & Lymphoma Society
Mattie Miracle Cancer Foundation
National Brain Tumor Society
Pediatric Brain Tumor Foundation
Rally Foundation for Childhood Cancer Research
Sarcoma Foundation of America
St. Baldrick’s Foundation
St. Jude Children’s Research Hospital


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