United we stand, divided we fall!
One of the challenges faced in the battle against childhood cancer is that we are a somewhat splintered community. There are many types of childhood cancer, some groups are national, some local, there is no one singular, dominant organization. Together, though, we can all become a powerful voice as we harness our collective strength.
Sound off on issues related to childhood cancer.
Children and adolescents with cancer need adults to be their voice to policymakers with the power to make a difference. The work of Washington politicians has a strong impact on the survival of children with cancer across the country. Children with cancer rely heavily on the investment of the federal government for improved research and care, as the vast majority of them are treated under the publicly-funded clinical trials system.
Legislative action has the potential to change the outlook for children with cancer for generations to come. For example, the Affordable Care Act, passed in 2010, changed the landscape for childhood cancer survivors by eliminating some of their biggest barriers to care as they become young adults: no more lifetime caps; no more pre-existing condition exclusions; and the ability to stay on their parents’ insurance longer.
Even after legislation has passed, the work of the childhood cancer advocacy community must continue. Legislation in the process of implementation requires careful monitoring and thoughtful engagement with agencies and stakeholders. Healthcare reform is an example of where ongoing community engagement is necessary to ensure that the state and federal marketplaces provide appropriate coverage options for children with cancer and survivors.
Advocacy Programs and Events
CAC2 Proclamation Toolkit
Reach out to your local and state officials to begin the process of having your city, county, or state proclaim September as Childhood Cancer Month. One of our CAC2 Advocacy Interest Group teams has prepared the document in the link below so that you have a clear set of steps to follow to make this appeal in your area. This is a small thing that each of us–organization and individual members alike–can do to make a difference.
Congressional Childhood Cancer Caucus & Summits
Chaired by Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), and G.K. Butterfield (D-NC), this is a bipartisan Caucus for members of the House of Representatives. The Caucus serves as a clearinghouse for information on pediatric cancer and a forum to aid legislators working together to address pediatric cancer. Every September, the Caucus holds a Summit on pediatric cancer issues to raise awareness and discuss current legislative issues.
Take Action: Ask your Representative to become a member of the Congressional Childhood Cancer Caucus or extend your thanks if they already are.
Childhood Cancer Action Day
This advocacy opportunity is held annually in Washington, DC and is hosted by the Alliance for Childhood Cancer, a coalition of over 30 national patient advocacy groups and professional medical and scientific organizations. This year Action Days was held on April 23-24, 2018.
The 8th Annual Childhood Cancer Action Days is taking place March 26-27, 2019. The two-day event includes issues and advocacy training and pre-arranged Capitol Hill visits with Members of Congress and their staff to discuss important childhood cancer issues currently before Congress. Learn more about how to participate – either virtually or in person – on the Alliance for Childhood Cancer website.
Recent Legislative Achievements
The Childhood Cancer STAR Act was signed into law on June 5, 2018 – a landmark moment for the childhood cancer community. The passage of the STAR Act was a true community effort that involved years of patience, hard work, and collaboration.
The STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. This legislation authorizes $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the NIH and CDC.
Meaningful legislation that represents a consensus of community priorities is difficult to craft and even more challenging to pass through Congress. The STAR Act is a milestone achievement that demonstrates that people and legislators can work together to address the challenges faced by families of the 16,000 children diagnosed with cancer every year.
President Trump signed the RACE for Children Act into law on August 18, 2017 as part of the larger FDA Reauthorization Act.
The Research to Accelerate Cures and Equity (RACE) for Children Act will expand and improve the treatment options available to children with cancer by requiring that new adult oncology drugs are also tested on children when the molecular targets are relevant to a particular pediatric cancer. It’s expected that the RACE Act will result in a significant increase in pediatric cancer clinical research and new therapies for childhood cancer, which remains the leading disease killer of American children.
RACE Act provisions evolved from a working group in 2015-2016 and subsequent blueprint report shepherded by members of CAC2 and the Alliance for Childhood Cancer, marking a truly collaborative and effective process.