On September 23rd, the White House convened leaders in the childhood cancer community to focus on ways to share data, accelerate trials, support families, and advance solutions to end the devastating impact of childhood cancer. This Forum was the first Childhood Cancer briefing hosted at the White House since 2016 and was spurred by the Cancer Moonshot – reignited by the President in February – as part of National Childhood Cancer Awareness Month this September. The Forum included leading cancer researchers, clinicians, patients, survivors, and advocates, and featured remarks from members of the first-ever Cancer Cabinet, including Dr. Alondra Nelson, who was heading the White House Office of Science and Technology Policy, and Michael Regan, Administrator of the Environmental Protection Agency. 

The mortality rate from all types of cancer among children and teens, according to the National Cancer Institute, has dropped by more than 50 percent since 1980, and the substantial majority of kids with cancer today are cured of their disease. But despite the progress of lives extended and lives saved, cancer is still the number two cause of death in America and the number one cause of death by disease for children. Every year, 1.8 million families are devastated by a cancer diagnosis, including 47 children in the United States each day. Today, we have nearly half a million childhood cancer survivors, while this represents great progress, too many carry the scars of treatment for a lifetime.

“Despite decades of progress in cancer care, research on childhood cancer survivors’ long-term treatments and management is relatively limited,” stated Dr. Alondra Nelson. “A major barrier for childhood cancer research and treatment development has been the existence of data silos, particularly between public and private entities.”

The conversation, which was livestreamed to the American public and is available here, focuses on updates from the Biden-Harris Administration on progress and plans, addressing questions and concerns from the childhood cancer community. Topics included: (1) Childhood Cancer Data Initiative (CCDI); (2) Research to Accelerate Cures and Equity or RACE for Children Act; (3) Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act; and (4) patient and family support and navigation.

The Childhood Cancer Data Initiative (CCDI) was launched as a $50 million per year, 10-year investment to harness and share data in ways that make faster progress in childhood cancers. At CCDI’s core are efforts to optimize research infrastructure by bringing together medical data from disparate sources.

According to Julie Guillot, pediatric acute myeloid leukemia (AML) mom, and childhood cancer advocate, “The Childhood Cancer Data Initiative can help speed discovery and maximize precision medicine by funding omics data generation linked to medical data.” 

Dr. Greg Reaman, Associate Director for Oncology Sciences at the Center for Drug Evaluation and Research at the Food and Drug Administration and incoming Chief Scientific Officer at the CCDI added, “There is nothing in the world like this. Up to and perhaps even more than 3000 children per year will be able to have their tumors genomically sequenced at the time of diagnosis, at no charge. This will provide opportunities for more precise diagnosis and will have immediate impact directing children to the right targeted therapies, whether the therapies are approved or investigational.”

In addition to focusing on methods to improve childhood cancer data sharing and drug discovery, there are also policy initiatives that have and continue to change the very nature of childhood cancer patient care. Dr. Danielle Carnival, the White House Cancer Moonshot Coordinator, noted, “The Research to Accelerate Cures and Equity or RACE for Children Act represents positive progress for getting life-saving treatments to children with cancer, and, as a result, the culture and landscape of drug development for pediatric patients with cancer has been transformed in very positive and meaningful ways.”

The purpose of the legislation is to facilitate pediatric cancer drug development and conduct of molecularly targeted pediatric cancer investigations for targeted drugs that are feasible and have potential to be effective in pediatric cancers much earlier than previously possible. Since enactment of RACE, approximately 40 percent of initial pediatric study plans for products directed at a relevant molecular target include plans for a pediatric investigation. Over 80 percent of drugs with a molecular target relevant to pediatric cancers that received their first approval in 2021 had a planned or ongoing pediatric investigation compared to approximately 40 percent in 2020, and less than 15 percent in 2019.

The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act authorized $30 million annually though FY23 to expand childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors. Specific provisions of the STAR Act included authorizing the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain all relevant clinical, biological, and demographic information on all pediatric cancer patients. The Act also authorized grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer and support the collection of cases into a national childhood cancer registry.  

Through the Cancer Moonshot, the Biden-Harris Administration is committed to improving the experience of people living with and surviving cancer as well as their families and caregivers. That means making it easier for people to access screening and diagnostics, bringing trials and quality care closer to home, providing patients and caregivers with the data and knowledge they need to make informed care decisions, supporting them through the financial and psychosocial aspects of a cancer diagnosis, and giving people with cancer and the people who care for them a seat at the table to improve our oncology system. Together, we can end cancer as we know it.


Stay Connected

Sign Up

We'll be in touch with the latest information on how President Biden and his administration are working for the American people, as well as ways you can get involved and help our country build back better.

Opt in to send and receive text messages from President Biden.

Scroll to Top Scroll to Top