We're making real progress on important policy issues impacting children with cancer and childhood cancer survivors:
March 2018: STAR Act Passes the Senate
On March 22nd, the Childhood Cancer STAR Act passed the Senate! Now, we push for a vote in the House. Join us as we work to get this life-saving legislation across the finish line.
The Childhood Cancer Survivorship, Treatment, Access & Research (STAR) Act of 2017 is sweeping childhood cancer legislation that will help children with cancer live longer, healthier lives. Learn more about this bill. →
The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress. It represents important bipartisan legislation designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.
The Childhood Cancer STAR Act of 2015 was passed by the U.S. House of Representative in the closing days of the 114th Congress but did not clear the Senate before the end of the session. We have high hopes to see this bill signed into law this session, but we need your help to get there. Use our action alert below to ask your Members of Congress to sign on.
AS OF APRIL 2018, THERE ARE OVER 360 COSPONSORS OF THE STAR ACT IN THE HOUSE - MORE THAN 80% OF THE HOUSE OF REPRESENTATIVES!
February 2018: CHIP Renewed for 10 Years
The Children's Health Insurance Program (CHIP) has a proven track record of providing high-quality, cost-effective coverage for children with cancer.
In January 2018, Congress agreed to a deal to re-open the government with a Continuing Resolution that included a 6-year extension of the Children's Health Insurance Program. Coming 114 days after CHIP expired, this reauthorization provided long-awaited relief to millions of American families who depend on CHIP for their kids' healthcare, including many families of children with cancer.
Just weeks later, on February 8th, Congressional leaders announced that they had agreed to lengthen the six-year extension to a full ten years, as part of a broader two-year budget agreement. This spending agreement funds CHIP through 2027, providing families with ease of mind for the foreseeable future.
Since its inception in 1997, CHIP, together with Medicaid, has helped to bring needed services to children with cancer and survivors. CHIP has helped ensure that 95 percent of all children in America are enrolled in some form of insurance coverage.
“CHIP was a bipartisan solution to a pressing problem facing American children and families when it was adopted in 1997, and its importance and impact in securing a healthy future for children with cancer has only increased.”
— Children's Cause for Cancer Advocacy
August 2017: RACE for Children Act Signed into Law
On August 19, 2017 President Trump signed the Research to Accelerate Cures and Equity for Children Act into law!
The Senate overwhelmingly passed the RACE Act on August 3, 2017 as part of a larger FDA user fees bill. The House of Representatives passed this legislation on July 12, 2017.
We thank Members of Congress for their support -- and we especially thank each of you who reached out to your Representatives and Senators throughout this process.
The FDA Reauthorization Act is a five-year reauthorization of user fee programs, which fund the agency's drug and medical device reviews.
The childhood cancer community celebrates this hard-fought achievement. RACE Act provisions hail from a blueprint report that grew out of a working group of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer in 2015-2016. For the past year, childhood cancer stakeholders - including the Children's Cause - have been involved in intensive bipartisan, bicameral negotiations with Congressional champions to make these recommendations a reality.
This legislation calls for patients to be part of the discussion with FDA about what drugs should be developed for kids. Children's Cause will continue to be at the table speaking up for our kids, and we continue to rely on your support to make us a stronger voice in Washington.
More on the RACE Act: The small population of children with cancer provides little market incentive for the biopharmaceutical industry to develop new pediatric oncology drugs. Childhood cancer remains the leading cause of disease-related death in our children, and new and better therapies are sorely needed for children battling cancer.
Fifteen years ago, Congress passed a pair of laws - the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) - that provide critically important information on the safe and effective use of medications in the pediatric population. While BPCA and PREA have yielded important new safety and labeling information for other children’s diseases, the laws have had a very modest impact on childhood cancer. In fact, exceptions carved out have resulted in PREA having virtually no effect in stimulating more treatments for childhood cancer.
The RACE Act will eliminate those exemptions and improve opportunities for more studies in childhood cancer by:
- Requiring that companies developing cancer drugs do PREA studies of their drugs in children when the molecular target of their drug is relevant to a children's cancer; and
- Ending the exemption of PREA obligations for cancer drugs with orphan designations if the molecular target of their drug is relevant to a children's cancer.