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Federal

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Pending Federal Legislation

The Give Kids a Chance Act (H.R. 3433, S. 2897)

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.

NIH and NCI Funding

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

  • $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

The Accelerating Kids’ Access to Care Act (H.R. 4758, S. 2371)

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.

The Pediatric Cancer Drug Supply Act (H.R. 6963, For House Members Only)

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.

Reauthorization of Gabriella Miller 2.0 Act (H.R. 3391, S. 1624)

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.

Finn Sawyer Access to Cancer Testing Act (H.R. 1780, S. 642)

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.

Reauthorization of the Creating Hope Act (H.R. 7384, For House Members Only)

The Creating Hope Act creates an incentive for rare, pediatric disease drug development. Under the Creating Hope Act voucher 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. This voucher comes 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.” The voucher is also transferable.

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