Legislation is one of the biggest ways to take action against cancer, both nationally and globally. Putting policy in place to further expand research, coverage, patient protection and more is one step closer to lessening the burden of cancer for all.
New milestones are being met every day with health legislation and cancer, but there are many more to meet. We’ve rounded up the more recent promising uses of law, including proposed plans for you to support and resources for you to utilize in the legal fight against cancer.
Childhood cancer is something you never want to imagine happening, but it is the unfortunate reality for many kids and their families. Illinois nonprofit Cal’s Angels knows this all too well. The pediatric cancer foundation—named after South Elgin 12-year-old Cal Sutter who battled leukemia—grants wishes, raises awareness and funds research. Cal’s Angels has recently brought cancer to the courts with Cal’s Law.
In April 2021, Illinois House of Representatives passed House Bill 2109, requiring Illinois Insurance Code to cover comprehensive cancer testing—including genome and DNA sequencing—for children diagnosed with cancer. After being sent to the Illinois Senate, the bill was passed once again without much debate. It is now awaiting approval by the governor.
You can follow Cal’s Law’s status at ilga.gov/legislation.
Illinois Biomarker Testing Coverage
Even more recently in Illinois, cancer advocacy groups celebrated another legislation win with the expansion of biomarker testing coverage in the state. Every cancer has a unique set of biomarkers, which are proteins and genes that can provide professionals with more information about the specific case, leading to personalized plans of care.
This coverage expansion passed in August 2021, making biomarker testing covered by state-regulated insurance plans and Medicaid for insured Illinoisans with advanced or metastatic stage III or IV cancer. Biomarker testing for cancer progression or recurrence will also be covered.
Federal Advanced Research Projects Agency for Health
In a bipartisan move at the federal level, U.S. Representatives Republican Fred Upton and Democrat Diana DeGette drafted in June 2021 legislation to create a Federal Advanced Research Projects Agency for Health (ARPA-H). Prior to this draft, the White House requested $6.5 billion in the same month to fund ARPA-H. The agency’s concept was first proposed by the Suzanne Wright Foundation, a nonprofit driving action against pediatric cancer.
ARPA-H would utilize federal resources, from funding to technology, to develop and deliver cures for deadly diseases like cancer, Alzheimer’s and more. The agency would focus on research that is goal-oriented with tighter time constraints than seen currently with the country’s traditional approach to health initiatives. Propelled by the COVID-19 pandemic and rapid development of vaccines, ARPA-H values collaboration and innovation to solve serious diseases more quickly.
If you’re feeling overwhelmed with law lingo by now, you’re not alone. The world of legislation can be intimidating, especially when your involvement is personal. For parents with children experiencing pediatric cancer, Kids TOO can help you navigate the convoluted nature of policy. A collaboration between Momcology, a nonprofit providing peer support for parents of kids with cancer, and the American Childhood Cancer Organization (ACCO), Kids TOO will assist you in advocating for meaningful action.
According to ACCO’s landscape analysis, 29 states currently have no mention of childhood cancer in state action plans. By empowering parents with effective strategies to implement childhood cancer language in state cancer action plans and advocate for pediatric cancer research inclusion in state budgets, children with cancer won’t get left behind in health legislation.
Learn more about Kids TOO at tfaforms.com/4895048.