ADVOCACY - Legislative Achievements

The childhood cancer community has ushered in some big legislative successes over the past several years. This is not a comprehensive list but it does highlight recent legislation that is improving the outlook for children with cancer, their families, and childhood cancer survivors.

The FY2022 appropriation bill provided the largest increase in childhood cancer-specific monies ever. The spending bill includes a total of $45 billion for NIH, an increase of $2.25 billion above the 2021 enacted level. The National Cancer Institute (NCI) at NIH received $6.9 billion, an increase of $353 million over FY21.  

The bill continues to support a variety of critical research initiatives relevant to children and adolescents with cancer and childhood cancer survivors, including:  $30 million to implement the Childhood Cancer STAR Act, $50 million for the Childhood Cancer Data Initiative, and $12.6 million for Gabriella Miller Kids First Research Act. 

In addition, some other good budgetary news includes $130 million for the Peer Reviewed Cancer Research Program (PRCRP) eligible categories ($15 million above FY21). While the full amount is not childhood cancer specific, it does include childhood and AYA cancers within the eligible categories. Since 2009, the PRCRP – part of the Congressionally Directed Medical Research Program administered by the Department of Defense – has supported innovative research in cancers designated by Congress as relevant to those in military service and their families.

Finally, the adopted budget provided $1 billion to create the Advanced Research Projects Agency for Health (ARPA-H) within the HHS Office of the Secretary. Funding is available for 3 years.  While this is not pediatric or AYA specific, ARPA-H is dedicated to solving thorny problems, which by any definition would include childhood cancer.

The Childhood Cancer Data Initiative (CCDI) grew out of President Trump’s 2019 State of the Union Address call for $500 million in childhood cancer funding over the next 10 years.  The initiative is building a community centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer.

CCDI is intended to facilitate access to the broadest possible collection of childhood cancer data, utilizing a federal investment of $50 million per year for 10 years. The first year of funding was fully secured for FY2020 and has been fully funded in each subsequent budget, empowering CCDI to move ahead with its ambitious slate of plans related to data collection and accessibility.  

The Childhood Cancer STAR Act was signed into law on June 5, 2018 – a landmark moment for the childhood cancer community. The passage of the STAR Act was a true community effort that involved years of patience, hard work, and collaboration.

The STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. This legislation authorizes $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the NIH and CDC.

As a follow up to the passage and funding of the Childhood Cancer STAR Act, CAC2 members spent many hours helping research and craft a document making suggestions to officials at the National Institutes of Health and the Center for Disease Control on how to best implement the new law. You can read the report from October 2018 here: Childhood Cancer STAR Act Implementation Report. This report underscores our community’s unity supporting the passage of the bill and further signals the community’s desire to continue to work together to implement STAR Act programs.

Congress extended funding for the Children’s Health Insurance Program (CHIP) for a full ten years, as part of a broader two-year budget agreement. This spending agreement funds CHIP through 2027, providing families with ease of mind for the foreseeable future.

Since its inception in 1997, CHIP, together with Medicaid, has helped to bring needed services to children with cancer and survivors. CHIP has helped ensure that 95 percent of all children in America are enrolled in some form of insurance coverage.

President Trump signed the RACE for Children Act into law on August 18, 2017 as part of the larger FDA Reauthorization Act. The Research to Accelerate Cures and Equity (RACE) for Children Act requires that new adult oncology drugs are also tested on children when the molecular targets are relevant to a particular pediatric cancer. It’s expected that the RACE Act will result in a significant increase in pediatric cancer clinical research and new therapies for childhood cancer, which remains the leading disease killer of American children.

RACE Act provisions evolved from a working group in 2015-2016 and subsequent blueprint report shepherded by members of CAC2 and the Alliance for Childhood Cancer, marking a truly collaborative and effective process.

Congress passed the 21st Century Cures Act, which included funding of the National Institutes of Health and the Cancer Moonshot. The Cancer Moonshot report included numerous research initiatives including pediatric projects in the areas of immunotherapy and fusion oncoproteins. .

Congress reauthorized the Creating Hope Pediatric Priority Review Voucher Act, which enables a company that develops a drug for pediatric cancer or another pediatric rare disease – and receives FDA approval – also receives from the FDA a Priority Review Voucher. The voucher comes with rights to faster FDA review of any future drug, enabling the voucher holder to receive a FDA “priority review” instead of a “standard review.”