Pending Federal Legislation – Take Action

H.R. 7630/S. 4120, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Reauthorization Act will extend the most comprehensive childhood cancer bill ever signed into law for another five years past its current scheduled end date of 2023.  Passage will continue to expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors.

You can read more about the bill here:  Childhood Cancer STAR Reauthorization Act.

H.R. 623/S. 1521, 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. On July 27, 2022, with 110 cosponsors, the House of Representatives passed HR 623 Gabriella Miller Kids First Research Act 2.0 and amended it to a five-year reauthorization of $25 million per year.  Senator Tim Kaine, author of S. 1521, intends to adopt the House passed language. 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. 3089/S. 1544, the Accelerating Kids’ Access to Care Act, which reduces regulatory burdens to allow children with complex medical needs greater access to out-of-state providers who can best meet their needs

You can read more about the bill here:  Accelerating Kids’ Access to Care Act.

H.R. 6972/S. 4215, 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.

H.R. 869/S. 289, the RISE Act – Clinical trials play a pivotal role in advancing pediatric cancer care and treatment. The COVID-19 pandemic has caused severe disruptions to federally-backed research, including pediatric cancer research. The Research Investment to Spark the Economy (RISE) Act provides $25 billion, including $10 billion for NIH, in needed relief to support independent research institutions, public laboratories, and universities throughout the country as well as provide needed regulatory flexibility so they can continue their work.

H.R. 3773/S. 1357, the PACT Act – Advancements in treatment and cures for children with cancer are not possible without sustained availability of federal research awards and consistent investments in the research workforce. The Pediatricians Accelerate Childhood Therapies (PACT) Act would create a new Trans-NIH career development award focused on early-career pediatric researchers as well as authorize a process to better coordinate and manage the pediatric research portfolio at the National Institutes of Health (NIH). This would include prioritizing research topic areas and work to align with the important research currently underway at NIH, including critical childhood cancer research.

S.3283, Protect America’s Children from Toxic Pesticides Act –The bill would ban the most damaging pesticides that have been scientifically proven to harm the safety of people and our environment.

  • A pesticide is deemed dangerous if the product or active ingredient is found to be carcinogenic, acutely toxic, an endocrine disruptor, harmful to pregnant women, or able to cause neurological or developmental damage
  • Pesticide ingredients are required to be registered determined to be safe in order to be used in pesticides
  • Any ingredient not registered is deemed to be dangerous and cannot be used in pesticides
  • Analysis of chemicals must use legitimate science and cannot take economic cost into consideration

 

H. Res. 404/S. Res. 231, 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:  

Provide significant funding increases for the National Institutes of Health (NIH) and National Cancer Institute (NCI)

Fully fund the Childhood Cancer STAR Act with a $30 million appropriation.

Fully fund the Childhood Cancer Data Initiative with a $50 million appropriation.

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.