Purple Law Consortium

This page is devoted to current and proposed legislative initiatives that will have an impact on the childhood cancer community.  We strongly encourage everyone to write their Representative and/or Senator and voice your opinion on the legislation that affects you and/or our childhood cancer community. Click on any of the legislative bills below that interest you to get all the information you need. Take action by contacting your Representative and speak up for the children.

You are their voice. Speak loudly. Speak often.

Click on any bill’s name below to get more detailed information.

Fully Fund The STAR Act To Help Prevent And Treat Childhood Cancer

Ask your member of Congress to ensure that S.292 – Childhood Cancer Survivorship, Treatment, Access, and Research Act is fully funded so vital work on childhood cancer research, surveillance, and survivorship can continue.

• This law authorizes NCI to support and expand collection of biospecimens from children, as well as adolescents and young adults (AYAs), diagnosed with cancer to build upon biorepositories and biospecimen research already underway with NCI support. The bill encourages that these efforts focus on cancer types/subtypes (and their recurrences) for which current treatments are least effective, and occur within the context of clinical trials.
• The law also authorizes NIH, with guidance from the NCI Director and in coordination with ongoing research activities, to conduct and support pediatric cancer survivorship research, and includes an emphasis on studying late effects of pediatric cancer treatment, as well as disparities in outcomes and barriers to follow-up care.
• Other provisions specific to NIH and NCI include requiring that at least one member of the presidentially appointed National Cancer Advisory Board be knowledgeable in pediatric oncology; reaffirming reporting requirements for NIH in addressing pediatric oncology research within congressional reporting, including its annual Pediatric Research Initiative Report to Congress; and expressing the sense of Congress that the NCI Director should ensure that all applicable study sections, committees, advisory groups, and panels at NCI should include one or more qualified pediatric oncologists, as appropriate.
• The law also authorizes HHS, through the Centers of Disease Control and Prevention, to award grants to state cancer registries to expand surveillance infrastructure to track the epidemiology of cancer in children and AYAs.
• Additional provisions in the law focused on pediatric cancer survivorship encourage the HHS Secretary to establish pilot programs to evaluate model systems for monitoring and caring for pediatric cancer survivors, and to conduct efforts identify best practices pediatric cancer survivorship care. The bill would also require HHS to conduct a review of activities related to workforce development for health care providers who treat pediatric cancer patients and survivors.