APHON Joins the Alliance for Childhood Cancer’s Creating Hope Reauthorization Act Letter to the Senate

June 26th, 2020

Senator Bob Casey
United States Senate
393 Russell Senate Office Building
Washington, DC 20510

Senator Susan Collins
United States Senate
413 Dirksen Senate Office Building
Washington, DC 20510

Dear Senator Casey and Senator Collins:

On behalf of The Alliance for Childhood Cancer, we are writing to offer our endorsement of the Creating Hope Act Reauthorization Act, S. 4010. Thank you for your continued leadership in the fight against childhood cancer.

As you know, more children are lost to cancer in the U.S. than any other disease. Before they turn 20, about 1 in 285 children in the U.S. will have cancer. However, there are very few cancer treatments that are specifically indicated for pediatric cancer. In addition, due to the lack of child-specific treatment options, survivors of childhood cancer often suffer long term health consequences due to use of harsh treatments intended for adult patients.

While recent decades have seen dozens of new Food and Drug Administration (FDA)-approved cancer therapies, only a handful of treatments for childhood cancers have been approved over the same period. Despite the significant unmet medical need, pharmaceutical companies have been reluctant to develop drugs for pediatric cancer, since the high costs associated with their research, development, marketing, and distribution are unlikely to be recouped following approval.

The Creating Hope Act, originally passed in 2012 and reauthorized through 2020, expanded the FDA priority review voucher program to incentivize pharmaceutical manufacturers to invest in drugs with indications for rare pediatric diseases. Under this program, a qualifying rare pediatric drug approval earns a manufacturer a voucher that guarantees them access to the FDA’s priority review system for any subsequent drug review. Whether a company chooses to use this voucher themselves or sell the voucher to another manufacturer, this program provides a helpful new incentive for increased investment in developing treatments for pediatric rare diseases like cancer. Through this program, the FDA has awarded vouchers for two pediatric cancer drugs, dinutuximab (for high risk neuroblastoma) and CAR T-cell therapy tisagenlecleucel (for relapsed acute lymphoblastic leukemia). These drugs offer new hope for children with cancer.

The Creating Hope Act Reauthorization Act would permanently reauthorize this important program that expands treatment options for children with cancer and their families and continues to advance the research that brings us closer to curing childhood cancers.

Thank you for your leadership on behalf of children with cancer. We look forward to working with you to enact the Creating Hope Act Reauthorization Act. Should you have any questions or need additional information, please contact Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer, at smilberg@allianceforchildhoodcancer.org.


The Alliance for Childhood Cancer
American Childhood Cancer Organization
American Society of Pediatric Hematology/Oncology
The 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
Rally Foundation for Childhood Cancer Research
Sarcoma Foundation of America
St. Baldrick’s Foundation

2318 Mill Road Alexandria, VA 22314 | alliance@asco.org | www.allianceforchildhoodcancer.org

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