February 2017: Two major bills introduced in Congress

RACE for Children Act Introduced in Congress

The bipartisan Research to Accelerate Cures and Equity for Children (RACE) Act (S.456) was introduced in both chambers of Congress yesterday, to expand opportunities for childhood cancer studies.

This legislation addresses shortcomings in the Best Pharmaceuticals for Children Act (BPCA, 2002) and the Pediatric Research Equity Act (PREA, 2003), which provide critical information on the safe and effective use of medications in the pediatric populations, advancing the health of children. 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. These two laws act in tandem as both carrot and stick to encourage new drug development for childhood diseases -- but exceptions have resulted in limited effectiveness for childhood cancer.

The RACE for Children Act could change that by eliminating those exemptions and improving opportunities for more studies in childhood cancer. Furthermore, the legislation would determine whether childhood cancer studies are warranted based on the "method of action" or affected biomarkers, rather than the site of the cancer, which is now the basis of most cancer drug development.

We thank the bill's original cosponsors, Senators Michael Bennet (D-CO) and Marco Rubio (R-FL) and Reps. Michael McCaul (R-TX) and G.K. Butterfield (D-NC), and we hope many more will sign on in coming weeks.

Take action here to ask your Members to sign on!

Ask Congress to Support Reintroduced STAR Act

82 House Cosponsors and Counting!

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, reintroduced this month as H.R.820 and S.292. The STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress.

The STAR Act is 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 bipartisan Childhood Cancer STAR Act of 2015 was passed by the U.S. House of Representatives 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 year but we need your help to get there:

1. Check the cosponsor map to see if your Senators and Representative have signed on.

2. Use our Write Congress form to quickly and easily send a letter to your Members of Congress to thank them for their support or ask them to add their name. We are hoping to quickly gain as many cosponsors as possible to get momentum for this bill's passage.

3. Share this ask with your friends and neighbors. 

This legislation has broad support from the childhood cancer community, including the Alliance for Childhood Cancer. We join the Alliance in thanking the bills' original cosponsors: Senators Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), and Jonny Isakson (R-GA) and Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA) and G.K. Butterfield (D-NC).

Ask your Members of Congress to sign on to this legislation.

Weighing in on Healthcare Replacement Proposals

The recent release of a 19-page policy brief drafted by Republican leaders in Congress is the first concrete outline of a GOP healthcare strategy in this new Congress. As "repeal and replace" discussions heat up in Washington, the Children's Cause continues to speak up about the critical importance of affordable, accessible coverage for our most vulnerable, including children with cancer and survivors.

Combined, the Affordable Care Act, Medicaid and the Children's Health Insurance Program (CHIP) cover over 40 million children and adolescents in our country. Medicaid covers more than a third of childhood cancer patients. Any changes to these programs must carefuly and comprehensively consider the impact on these vulnerable populations.

We share some quick links here to learn more and take action:

- NEW: A letter to Congressional leaders from the Alliance for Childhood Cancer

- On our blog: Quick Healthcare 'Fixes' Put Children with Cancer at Risk

- NPR: GOP Considers Trimming Health Law's 10 Essential Benefits (2/22/17)

- Vox: Cancer Can Bankrupt its Victims -- Obamacare was Designed to Stop That (2/23/17)

- The Washington Post: Cancer Patients, Survivors Fear GOP Efforts to Dismantle the Affordable Care Act (2/23/17)

Children's Cause Letter to the co-chairs of the Childhood Cancer Caucus (PDF)

- Take action: Ask Congress to Protect Healthcare Access for Children with Cancer

We are urging policymakers to protect children and adolescents with cancer and the nation's 500,000 childhood cancer survivors as Congress considers any replacement proposal.

Speaking out on Vaccine Safety

The Children's Cause joined hundreds of other health organizations in sending a letter to President Trump, emphasizing that vaccines are safe, effective and save millions of lives. The letter includes a non-exhaustive list of scientific studies demonstrating the safety of vaccines, with the offer to meet and share more.

An excerpt from that letter: 

"On behalf of organizations representing families, providers, researchers, patients, and consumers, we write to express our unequivocal support for the safety of vaccines. Vaccines protect the health of children and adults and save lives. They prevent life-threatening diseases, including forms of cancer. Vaccines have been part of the fabric of our society for decades and are one of the most significant medical innovations of our time."

Immuno-compromised children rely on the strength of 'community immunity' to keep them safe. The Children's Cause is steadfast in our belief that families battling pediatric cancer face many unavoidable health challenges but they should never have the life of their child threatened by a disease that could have been prevented if only their peers had been appropriately vaccinated.

We encourage you to send your own letter to President Trump on this or any other subject impacting children with cancer.

Jessica Kean