Senate Passes the RACE for Children Act


On August 3, the leadership of Kids v Cancer, an advocacy group promoting pediatric cancer research, issued the following statement:

Today, the U.S. Senate passed the FDA Reauthorization Act and with it, the RACE for Children Act. Now, new cancer drugs will be developed not only for adults—but for kids too.  With the RACE for Children Act as law:

    • Kids with cancer will have many more novel drugs and clinical trials open to them
    • Pediatric oncologists will have new information about which cancer drugs might help their kids, what the dosage of the drugs should be, and whether the drugs are safe.
    • Companies developing cancer drugs will, as standard practice, plan to develop their drugs for kids with cancer.

There are some 900 drugs in the pipeline for adult cancers, but few are ever studied for children. Kids v Cancer began developing solutions to this problem in 2013. In 2014, we drafted the KIDS Innovative Drugs Act, which was introduced in 2016 as the RACE for Children Act (RACE). RACE updates the Pediatric Research Equity Act (PREA) to authorize the U.S. Food and Drug Administration (FDA) to require companies developing cancer drugs for adults to also develop the drugs for children with cancer.

Over the course of the last 3 years, Kids v Cancer secured endorsements from major research centers, including St. Jude's; MD Anderson; Nemours; Memorial Sloan Kettering; Duke; and the Children's Oncology Group, and from over 250 advocacy groups, including Brookes Blossoms; CureSearch; The Carson Leslie Foundation; The Max Cure Foundation; Rally Foundation; Swifty Foundation; The Nicholas Conor Institute; The Truth 365; With Purpose; and others. Nature endorsed RACE in 2016, and CAC2 provided active support through its social media outreach. We were pleased that The Alliance for Childhood Cancer, the American Cancer Society, and ASCO came on board in March 2017.

We are grateful to our champions in Congress: Senators Michael Bennet and Marco Rubio; Chairman Lamar Alexander and Ranking Democrat Patty Murray in the Senate; and Representatives Michael McCaul and G.K. Butterfield and Chairman Greg Walden and Ranking Democrat Frank Pallone in the House. This could not have been done without their leadership and commitment and without the extraordinary efforts of their able staff.

We are also grateful for the leadership of the FDA, from their public meetings to their input at Congressional hearings to their technical assistance to Congress.

Last night, on the floor of the Senate, Senator Rubio said, “I'm pleased that while there are many things we have not done, we will leave here tomorrow or next week knowing that at least we did one thing that will matter, and it's an important thing because these children that we're trying to help, they do not have time to continue waiting for us to step up and take action.”

This morning, there again, Senator Bennet stated, “Today's passage of the RACE for Children Act is a breakthrough for kids in Colorado and around the country fighting cancer. This legislation will open the door for cutting-edge treatments and precision medicines that could make all the difference for kids battling this devastating disease.”

Thanks to everyone's support, on July 12, RACE passed on House floor as part of the FDA Reauthorization Act. And on August 3, RACE passed on the Senate floor as part of the FDA Reauthorization Act. Now, it's on to the President's desk for signature. We want to thank everyone for all their hard work. This is a key step toward changing the landscape of pediatric cancer research.

Nancy Goodman, Executive Director 
Jennifer Flynn, Social Media Director
Elena Gerasimov, Program Director, Compassionate Use Navigagtor
Leika Uzcategui, Business Manager
Kids v Cancer

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.