Awareness Month 2019: Report from Washington

 

The past several days have been busy ones in Washington, DC, as families, survivors, advocates and supporters gathered together to recognize Childhood Cancer Awareness Month with a flurry of events and activities. Every year these events give us a treasured opportunity to reconnect with old friends, meet new families, and join together with our colleagues across the community to mark our shared progress in the fight against childhood cancer.

Here, we round up some highlights for those who were unable to make it to DC:

Rally+Group+Picture.jpg

Things kicked off last Thursday with the 7th Annual Rally for Medical Research Hill Day, which brought approximately 300 advocates to Capitol Hill to lobby for strong funding of the National Institutes of Health (NIH).

Also last week, Hyundai Hope on Wheels celebrated ‘DC Days of Hope,’ highlighting the work of their Youth Ambassadors and the achievements of the 76 cancer researchers that Hope on Wheels supported in 2019 with a combined $16 million in grants. According to Hyundai CEO Jose Munoz, the company is planning to commit approximately $13.2 million this month alone to support 52 childhood cancer research projects.

On Friday, September 20th, we joined the Congressional Childhood Cancer Caucus for their 10th Annual Childhood Cancer Summit on Capitol Hill. We heard from Caucus co-chairs Michael McCaul (TX-10), Jackie Speier (CA-14), GK Butterfield (NC-01), and Mike Kelly (PA-3), who spoke of the great progress made over the past decade — and the work still to be done.

“Our goal is to eradicate this disease from our planet in our lifetime.”
— Representative McCaul

At the Summit, Members of Congress announced the introduction of legislation to permanently reauthorize the Creating Hope Act. The Creating Hope Act, originally passed in 2012 and reauthorized through 2020, expanded the FDA priority review voucher program to incentivize pharmaceutical manufacturers to invest in drugs with indications for rare pediatric diseases. The Creating Hope Reauthorization Act of 2019 would permanently reauthorize this important program.

Take Action on this Legislation →

Dr. David Poplack spoke at the Summit about the global impact of pediatric cancer. Dr. Poplack, one of our former Board members, shared that over 100,000 children develop cancer in sub-Saharan Africa every year — and 90 percent will die. Poverty, inadequate facilities, poor access to cancer drugs, delay in diagnosis, and a lack of trained doctors and nurses all contribute to the abysmal survival rate.

Dr. Poplack is the Director of Global HOPE (Hematology-Oncology Pediatric Excellence), an initiative working to turn this tide. Global HOPE is focused on training African doctors and nurses, building centers of excellence, and providing access to cancer drugs, with a goal of saving the lives of hundreds of thousands of African children. To date, they have trained over 16,000 healthcare professionals. Dr. Poplack reported that in 2016, there were no pediatric oncologists in Uganda. Today, there are eight.

We also got a status update on two big policy initiatives - the Childhood Cancer Data Initiative (CCDI) and the STAR Act - from the NCI’s Dr. Tony Kerlavage. Dr. Kerlavage is Director of the NCI’s Center for Biomedical Informatics and Information Technology. He described the CCDI and the Childhood Cancer STAR Act as “parallel efforts that complement and strengthen each other.”

0920191045.jpg

On the STAR Act, Dr. Kerlavage reported on the first round of survivorship research awards from the NCI and shared that the second round of applications are due January 3, 2020. He also discussed biobanking efforts, including a $1.5 million award to the Children’s Oncology Group Biobank at Nationwide Children’s Hospital to enhance specimen collection, verification, and banking. NCI leadership is currently identifying additional funding opportunities for FY2020.

CCDI is the program launched by the president’s State of the Union address, wherein $50 million annually was promised to childhood cancer. Goals of the CCDI include: maximizing opportunities to improve treatments and outcomes for children with cancer; building a connected data infrastructure to enable sharing from multiple sources; developing and enhancing tools and methods to extract knowledge from data; and identifying opportunities to make data work better for patients, clinicians, and caregivers. A CCDI Symposium was held earlier this summer, and a Post-CCDI Symposium Webinar is being held on October 8th (register here). One of the next steps will be an NCI Position Paper on CCDI Approach, due this fall.

“With the CCDI, we hope to develop a federated data framework that connects multiple existing and new data repositories and offer tools for sharing and analyzing data, including data generated from STAR Act efforts,” said Dr. Kerlavage. “All of these efforts are dedicated to a goal that I know we all share: improving outcomes and quality of life for children with cancer, childhood cancer survivors, and their families and - in turn - provide hope for our children.”

A big weekend of CureFest activities, including a rally to the Capitol and a candlelight vigil, concluded on Sunday with CureFest on the National Mall. Sunday’s events included a walk, live entertainment, and informational exhibit booths hosted by organizations like our own. Children’s Cancer Cause was proud to once again be a bronze sponsor of CureFest, an event we look forward to every year. Thank you to everyone who stopped by our exhibit booth to learn more about our work.

 
AwarenessJessica KeanCureFest, September, CCAM, Awareness Month