Pending Federal Legislation – Take Action

H.R. 4758/S. 2372, Accelerating Kids’ Access to Care Act (AKACA) — Cancer care for children is not always available close to home, which means many families must travel to other states for treatment.  Accessing care in other states is time consuming and challenging to navigate.  This legislation would improve children’s access to needed out-of-state health care by streamlining the Medicaid provider screening and enrollment process. 

You can read more about the bill here:  AKACA

H.R. 3391/S. 1624, the Gabriella Miller Kids First Research Act 2.0 – The Gabriella Miller Kids First Pediatric Research Program helps researchers uncover new insights into the biology of childhood cancer and structural birth defects, including emerging scientific opportunities, rising public health challenges, and knowledge gaps. Since the program was enacted, Congress has provided $75 million to childhood cancer and disease research, with funding set to expire in Fiscal Year 2023. The new legislation would reauthorize and increase funding for the National Institute of Health’s Gabriella Miller Kids First Pediatric Research Program to support lifesaving research of treatments for childhood cancers.The Kids First program will, over the next five year period, be able to expand a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare disease, and will continue to support development of computational tools to analyze very large, complex genomic, and clinical data sets.

You can read more about the bill here and discover how you can take action to support its passage:  Gabriella Miller Kids First 2.0.

H.R. 1780/S. 642, Finn Sawyer Access to Cancer Testing Act — The Finn Sawyer ACT will provide CMS (Medicare, Medicaid and CHIP) coverage for cancer patients to receive broad-spectrum molecular diagnostics at the time of their cancer diagnosis.

You can read more about the bill here:  Finn Sawyer ACT

H.R. 4363/S. 2213, Comprehensive Cancer Survivor Act (CCSA)–The bill aims to address the entire survivorship continuum of care. It has two childhood cancer provisions:

  • Section 13: Promoting State Innovations to Ease Transitions to the Primary Care Setting for Children with Cancer directs the Secretary of HHS to convene a stakeholder group of representatives of childhood cancer advocacy organizations, Medicaid beneficiaries, providers with childhood cancer expertise, the National Association of Medicaid Directors, and other relevant representatives to develop best practices for States to ease transition from active oncological care to primary care of child or adolescent with cancer. The Secretary will create a report and work with states on innovative strategies to help children and adolescents with cancer who transition from oncological care to primary care.
  • Section 14: Childhood Cancer Demonstration Model and Standard of Care amends the CMS demonstration authority statute where there is a list of over 25 models that CMMI is encouraged to implement by including a new Medicaid pediatric survivorship care demonstration model. The model would promote a standard of care to manage the transition of children from active oncology care to primary care through the  promotion and use of survivorship care plans.

You can read more about the bill here:  CCSA

H.R. 6963, The Pediatric Cancer Drug Supply Act  (For House Members Only) — Drug shortages continue to limit the delivery of the quality care to some children with cancer.  This legislation creates a pilot program that direct the U.S. Department of Health and Human Services (HHS) to establish and maintain a 6-month reserve of essential therapies use to treat cancer in children.

H.R. 6664, Innovation in Pediatric Drugs Act of 2023 (For House Members Only) — This bill would strengthen the development of childhood cancer drugs by improving the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) and build upon the promise of the Research To Accelerate Cures and Equity (RACE) Act. It would amend PREA to lift its orphan exemption, ensuring that children with rare diseases can benefit fully from the pediatric research requirements and give FDA the authority it needs to ensure that legally required pediatric studies are completed in a timely way. It would amend BPCA to increase the authorization level of this program to $50 million to keep up with the increasing need for and cost of these studies.

You can read more about the bill here:  Innovation in Pediatric Drugs Act

H.R. 7384, Creating Hope Reauthorization Act — This bill was originally passed in 2011 and has been reauthorized twice since then (in 2016 and 2020).  It expands the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases. Two drugs receive priority review for each voucher: the drug winning a voucher for a neglected or rare pediatric disease and the drug using a voucher for another indication. The FDA awarded Priority Review Vouchers (PRV) for four of the six drugs originally approved in the first instance for cancer treatment for children since its passage. PRV’s are transferable and are desired incentives for developers of drugs for rare pediatric diseases. Holders of a PRV get a faster FDA drug approval process for a future drug of their choice. The vouchers are transferable and may be sold or traded.

The Give Kids a Chance Act — The Give Kids a Chance Act would help ensure kids with cancer have access to the most modern clinical trials by  authorizing the FDA to direct companies to perform a pediatric cancer study for a combination of drugs if the company is seeking approval for a drug to treat an adult cancer and that drug has a molecularly relevant pediatric indication.

DIPG Pediatric Brain Cancer Awareness Day Resolution – Diffuse Intrinsic Pontine Glioma (DIPG) is the leading cause of childhood brain tumor deaths. This resolution designating a DIPG Awareness Day will help spread awareness about this deadly disease, and support researchers in their efforts to find new therapies to treat DIPG.

Appropriations Requests:  

NIH and NCI Funding

We urge Congress to provide significant funding increases for the National Institutes of Health (NIH) and National Cancer Institute (NCI).

Federal Funding for Childhood Cancer Programs

  • $30 million to fully fund the Childhood Cancer STAR Act for a seventh year
  • $50 million to fully fund the Childhood Cancer Data Initiative for a sixth year

Department of Defense’s Peer-Reviewed Cancer Research Program and Support of the Inclusion of Childhood Cancer Topic Areas – Childhood cancer affects families regardless of geographical location, occupation, or income, and impacts military families without prejudice. The Peer Reviewed Cancer Research Program (PRCRP) at the Department of Defense funds vital research to enhance our understanding of deadly tumors and more broadly cancer in children, adolescents, and young adults so that treatments can be more effective and less harmful to children.