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. Learn more
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
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 31 national organizations. This year Action Days will be held on May 1 & 2. Click here to register.
In 2016, Action Day brought together 250 childhood cancer patients, survivors, families and advocates from all over the country to meet with Member of Congress and their staff. Hundreds of additional advocates participated in a Virtual Action Day by sending letters to their Members of Congress.
Pending Legislation of Community Interest
The STAR Act of 2015 passed the House of Representatives unanimously in 2016, but did not clear the Senate before the Session ended
This bipartisan legislation will advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. We need your help to push it through this year!
You can download a summary of the bill here.
There are almost 900 drugs in the adult cancer pipeline, but only a handful are in development for children. The Pediatric Research Equity Act (PREA) addresses this problem by requiring drug companies to develop their adult drugs in children as well. However, PREA has never applied to cancer drugs because children’s cancers occur in different organs than adult cancers. The RACE for Children Act (Research to Accelerate Cures and Equity Act) would update PREA by providing that companies developing a cancer drugs would undertake PREA studies of their drug in children when the molecular target of their drug is relevant to a children’s cancer. To find out more about the RACE for Children Act, please click here.
This resolution raises awareness to the realities of pediatric brain cancer, and requests greater consideration for pediatric and high mortality rate cancers with our US government resources for cancer research. Introduced on January 30th to the House Energy and Commerce Committee by Representative Steve Knight (R-CA-25) and co-sponsored by Jackie Speier (D-CA-14), it requires a vote in the House of Representatives only, and designates May 17 as National DIPG Awareness Day.