Federal

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Pending Federal Legislation

The Give Kids a Chance Act (H.R. 3433, S. 2897)
Status: Has passed the US House and is awaiting approval in the Senate.
Background: No single new cancer drug will be a new cure for patients with pediatric cancer.  Adults and kids with cancer need combinations of new cancer drugs for new cures.  For this reason, from 2020 to 2023 the FDA approved 40 combinations of cancer drugs for adults.  However, during that same time, the FDA only approved two new combinations for kids with cancer. 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.
The Pediatric Voucher Program (PVA, aka the Creating Hope Reauthorization)
Status: Has been folded into Give Kids a Chance, so it also has House approval. Extension of the PVR program was included in the Continuing Resolution to keep the government operating until December 20 that passed in September.  This means the Give Kids a Chance Act needs to be steered through the Senate before the end of the year or the Pediatric Voucher Program will sunset.
Background: The Pediatric Voucher Program creates an incentive for rare, pediatric disease drug development. Under the program, if a company develops a drug for children with a rare and life-threatening illness and receives FDA approval for their drug, then they also receive from the FDA a voucher with rights to faster FDA review of any future drug for any other disease, enabling the voucher holder to receive an FDA “priority review” instead of a “standard review.”
Accelerating Kids’ Access to Care Act (H.R. 4758, S. 2371)
Status: This bill has passed in the House, and it has to be steered through the Senate before the end of the year or start again from scratch in the new year.
Background: Children with complex medical needs can’t always receive the highly specialized care they need within their home state. This legislation would offer states the ability to streamline the Medicaid provider screening and enrollment process, so children do not experience red-tape related delays in receiving life-saving treatments.
Reauthorization of Gabriella Miller 2.0 Act (H.R. 3391, S. 1624)
Status: The bill passed in the House March 5, 2024. Sen. Tim Kaine (D-VA), Jerry Moran (R-KS) and 13 other bipartisan Senators reintroduced the Senate version of the bill. If this passes in the Senate and is signed into law, the bill will provide Kids First with a five-year reauthorization of $25M per year.  The bill is currently blocked in the Senate.
Background: Since it was enacted in 2014, the Gabriella Miler Kids First Research Act has raised $88 million for childhood cancer research and established the Gabriella Miller Kids First Data Resource Center, a comprehensive data resource for research and patient communities. Gabriella Miller 2.0 reauthorizes this initiative and finds a new source of funding, without costing taxpayers, by redirecting penalties collected from health, medical, and beauty companies that violate laws and regulations.
The Pediatric Cancer Drug Supply Act (H.R. 6963, For House Members Only)
Status: Bill has been introduced in the House and referred to the Subcommittee on Health.
Background: Drug shortages continue to limit the delivery of quality care to many children with cancer.  This legislation creates a pilot program that directs the U.S. Department of Health and Human Services (HHS) to establish and maintain a 6-month reserve of essential therapies used to treat cancer in children.
Finn Sawyer Access to Cancer Testing Act (H.R. 1780, S. 642)
Status: Bill has been introduced in the House and referred to the Subcommittee on Health. It has also been introduced in the Senate and referred to the Committee on Finance.
Background: This bill provides Medicare, Medicaid, and Children’s Health Insurance Program (CHIP) coverage for broad-spectrum molecular diagnostics for children at the time of their cancer diagnosis. Additionally, the Department of Health and Human Services must establish an education and awareness program for physicians and the public about genomic testing and the role of genetic counselors.
Innovation in Pediatric Drugs Act of 2023 (H.R. 6664, For House Members Only)
Status: Introduced in the House and referred to the Subcommittee on Health.
Background: 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.
Comprehensive Cancer Survivor Act (H.R.4363, S. 2213) 
Status: Bill has been introduced in the House and referred to the Subcommittee on Health. It has also been introduced in the Senate and referred to the Committee on Finance.
Background: 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.

Appropriations: Since 2017, the STAR Act has received annual appropriation of $30 million to the implementation of various components of the Childhood Cancer STAR Act and the Childhood Cancer STAR Reauthorization Act.  This year, both the relevant House and Senate Committees have recommended additional funding of $20 million.  If that recommendation makes it into the final budget, advocates hope that the agencies will concentrate on the following four areas:

  • Enhance childhood cancer survivorship research,
  • Broaden the scope of the highly successful Molecular Characterization Initiative,
  • Expand the centralized biorepository for the next frontier of research and new treatments, and
  • Fund national pediatric cancer registry infrastructure
These updates have been sourced from the CAC2 (Coalition Against Childhood Cancer) Member Hub.
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