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The Alliance for Childhood Cancer Applauds Inclusion of RACE for Children Act in Just Passed FDARA Legislation

Press Release

Organizations dedicated to improving the lives of children with cancer applaud the bipartisan, bicameral passage of legislation to improve drug development for pediatric cancers.

The Alliance for Childhood Cancer, representing more than 30 national patient advocacy groups and professional medical and scientific organizations invested in advancing the interests of children with cancer, applauds the inclusion of the RACE for Children Act in the FDA Reauthorization Act of 2017 (FDARA) legislation, passed in the Senate today and in the House in July.

The Alliance especially thanks the leadership of Representatives Michael McCaul (R-TX) and G.K. Butterfield (D-NC) and Senators Marco Rubio (R-FL), Michael Bennett (D-CO), Chris Van Hollen (D-MD) and Cory Gardner (R-CO) in co-sponsoring the legislation and shepherding it through to final inclusion in FDARA.

“Children with cancer do not benefit at the same rate from breakthrough therapies developed for adult cancers in recent years. The RACE for Children Act is a step forward in addressing this disparity,” said Dr. Michael Link, co-chair of the Alliance for Childhood Cancer.

The Alliance specifically believes that provisions in the RACE Act that require earlier meetings on pediatric study plans and require a modern interpretation of when pediatric cancer trials should be required for cancer drugs will help make new therapies available for children. The Alliance is also pleased that the orphan drug exemption in the Pediatric Research Equity Act has been eliminated for cancer drugs. This exemption, which the Alliance has long called for, has prevented FDA from requiring pediatric studies for new cancer therapies.

We look forward to helping to implement the law and engaging in a robust and open interaction with FDA to monitor and evaluate the changes in how FDA handles new drugs that might be effective treatments for children with cancer.

Childhood cancer remains the leading cause of disease-related death of children in the United States despite advances in survival rates for some types of childhood cancer. One in five American children diagnosed with cancer will not survive their disease, and of those who do, 2/3rds of survivors will suffer at least one chronic health condition.

About the Alliance for Childhood Cancer

Founded in 2001, the Alliance for Childhood Cancer is a forum of over 30 national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington DC, to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer. For more information visit www.allianceforchildhoodcancer.org

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