March 20, 2017
Senator Marco Rubio
U.S. Senate
Washington, DC 20510
Senator Michael Bennet
U.S. Senate
Washington, DC 20510
Representative Michael McCaul
U.S. House of Representatives
Washington, DC 20515
Representative G.K. Butterfield
U.S. House of Representatives
Washington, DC 20515
Dear Senator Rubio, Senator Bennet, Representative McCaul and Representative
Butterfield:
The undersigned members of the Alliance for Childhood Cancer (Alliance), 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, write to thank you for your commitment to
improving drug development for children with cancer and to formally support the
Research to Accelerate Cures and Equity (RACE) for Children Act (S. 456/H.R. 1231).
The RACE for Children Act recognizes the important need to improve the Best
Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA)
to maximize the development of cancer therapies specifically for children. Specifically,
we are grateful for the recognition and accommodation of a broader interpretation of
when pediatric cancer trials should be required. The Alliance helped develop similar
recommendations in 2012 and since that time has sought the enactment of these
provisions. These changes will improve the availability of therapeutic treatments for
children with cancer.
As you know, the Alliance sought even broader changes to BPCA and PREA, specifically
around lifting the orphan exemption for a broader range of drugs, earlier PREA pediatric
study planning and transparency of written requests issued under BPCA. We appreciate
the efforts to date undertaken by your staff to address these issues, and we hope to
continue to work with you and your staff to incorporate these provisions in the future as
Congress considers user fee legislation in 2017.
We look forward to working with you to advance BPCA and PREA legislation that will
comprehensively address the needs of children with cancer.
Sincerely,
The Alliance for Childhood Cancer
American Cancer Society Cancer Action Network
Alan B Slifka Foundation
American Childhood Cancer Organization
American Society for Clinical Oncology
American Society of Pediatric Hematology/Oncology
Association of Pediatric Hematology/Oncology Nurses
Association of Pediatric Oncology Social Workers
B+ Foundation
Children's Brain Tumor Foundation
Children's Cause for Cancer Advocacy
Children's Oncology Group
CureSearch for Children's Cancer
Kids v Cancer
Mattie Miracle Cancer Foundation
Rally Foundation
Sarcoma Foundation of America
St. Baldrick's Foundation
St. Jude Children's Research Hospital
The National Children's Cancer Society
The Pediatric Brain Tumor Foundation