Pending Federal Legislation – Take Action

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

Accelerating Kids’ Access to Care Act (AKACA)–This bill would establish a voluntary pathway available only to providers caring for children (under 21) to enroll in other states’ Medicaid programs quickly. This pathway would only be available to providers enrolled in their own state’s Medicaid program. The expedited pathway will allow providers to step in and deliver essential care to children with complex medical needs such as cancer.

You can read more about the bill here:  AKACA

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).

  • $50.924 billion for NIH, an increase of $3.47 billion
  • $9.988 billion for NCI, an increase of $2.668 billion

Federal Funding for Childhood Cancer Programs

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