Michael Mosier Defeat DIPG Foundation Statement on RACE for Children Act



The RACE for Children Act gives children fighting cancer access to promising treatments.

Bethesda, MD – Michael Mosier Defeat DIPG Foundation applauds the introduction by Senator Michael Bennet (D-CO), Senator Marco Rubio (R-FL), Representative Michael McCaul (R-TX), Representative G.K. Butterfield (D-NC-01), Representative Chris Van Hollen (D-MD-08), and Representative Sean Duffy (R-WI-07) of the RACE for Children Act (Research to Accelerate Cures and Equity for Children Act). This bipartisan, bicameral bill would enable children with cancer to have access to clinical trials of the most promising cancer drugs with molecular targets.

Pediatric cancer is the number one disease killer of children. However, kids with cancer cannot get access to the most promising and novel unapproved drugs. Cancer drug development is more exciting than ever, as every day there are new understandings of molecular targets. Unfortunately, when companies abandon development of drugs for adult cancers – which is the case the vast majority of the time – the opportunity to develop these drugs for children disappears. This bill would authorize the U.S. Food & Drug Administration to require pediatric studies when a molecular target of an adult cancer drug is relevant to a children’s cancer.

Unlike almost all Congressional bills, the RACE for Children Act is not a new program: it is merely an update of the Pediatric Research Equity Act (PREA) that enables the law to catch up with the science. PREA requires companies developing drugs for adults to also develop them for children. However, contrary to Congressional intent, PREA has never applied to cancer because children’s cancers occur in different organs than do adult cancers. Now that cancer drug development is by molecular target, the RACE for Children Act would apply PREA by molecular target as well.

“We commend the legislators who introduced this bill for their leadership in taking a stand for children fighting cancer. My six-year-old son, Michael, battled a devastating pediatric brain cancer called DIPG with few clinical trial options and essentially no hope for survival,” said Jenny Mosier, Co-Founder and Executive Director of Michael Mosier Defeat DIPG Foundation, “We must expand options for our children. I am heartened to see that the RACE for Children Act could open possibilities for kids to have earlier access to the most promising and innovative drugs.”

“Researchers in Colorado and throughout the country are making dramatic advances in the fight to treat and cure cancer. But there has been a lag in the amount of research devoted to pediatric cancers,” Bennet said. “This bill will help use what has been learned from adult cancer research to help treat kids with cancer. It’s a simple update to our laws that has the potential to help save thousands of kids.”

“Childhood cancer touches too many families in Florida, including my own, but modern technology and medical advancements have me more optimistic than ever that cancer as we know it can be defeated in our lifetime. It is important to focus on helping more children overcome cancer in the 21st century, and this legislation I am sponsoring will help,” said Rubio.

“I’m proud to introduce the RACE for Children Act to encourage more research into more treatment options so children fighting cancer across our nation will have better chance to beat this disease. I’m especially proud to introduce this bill on behalf of the many advocates, moms, dads and children who have tirelessly fought to get more attention, funding and resources for the fight against pediatric cancer. I look forward to continuing my work with them and other stakeholders to make this important legislation the law of the land.”

“We’ve made great strides in combating childhood cancer, but unfortunately the laws governing childhood cancer research are misaligned with the current science of cancer drug development,” said McCaul. “The RACE for Children Act will modernize the law to provide for pediatric studies on the most promising and innovative treatments. I will continue to work with my colleagues and the advocacy community to find ways to give hope to the nearly 15,000 children and adolescents diagnosed with cancer each year.”

“Pediatric cancer remains the number one cause of disease-related death for children in the United States, surpassing deaths from asthma, diabetes, congenital anomalies, cystic fibrosis, and pediatric AIDS combined. While the cause of childhood cancer remains unknown, advancement in modern technology has allowed us to increase survival rates.” said Butterfield.  “I am proud to join my colleagues in the introduction of the RACE for Children Act, which invests in advanced pediatric cancer treatment that will make a tremendous difference in the lives of families in North Carolina and across the country.”

“Childhood cancer remains the leading cause of death in American children, and the lack of available treatments is a tragedy,” Van Hollen said. “I’m proud to join with my colleagues in introducing The RACE for Children Act, which will help advance research into lifesaving cures. We must continue to work together to combat this deadly disease and to promote the development of new treatments for the nearly 16,000 children who are diagnosed with cancer every year in America.”

“We can defeat childhood cancer, and the RACE for Children Act will help us get there,” said Duffy. “Our children deserve twenty-first century laws that reflect the latest research and development in our ongoing battle against cancer.”

The bill is supported by the Coalition for Pediatric Medical Research, Children’s Hospital Colorado, Dana-Farber Cancer Institute, Duke University Medical Center, Georgia Regents Health System, Massachusetts General Hospital for Children, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, Nemours Children’s Health System, NYU Langone Medical Center, Rady Children’s Hospital – San Diego, St. Jude Children’s Research Hospital, Texas Children’s Hospital, the Children’s Hospital of Philadelphia, and more than 100 pediatric cancer advocacy organizations.

Michael Mosier Defeat DIPG Foundation is a 501(c)(3) organization dedicated to promoting awareness and finding treatments and a cure for the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma (DIPG), through funding of medical research. Learn more at defeatdipg.org.