By Bill Thomas | January 2nd
The U.S. Congress narrowly avoided a government shutdown last week with the passing of a new spending package on Saturday, December 21. Approval of the package, however, came at the expense of the pediatric cancer community. Members of the community were devastated to learn that several provisions designed to help develop more effective, less toxic therapies and improve treatment accessibility had been suddenly excised from the package without warning or explanation.
Originally, the spending package included the following:
- the Gabriella Miller Kids First Research Act 2.0., which would have extended the National Institutes of Health’s Gabriella Miller Kids First Research Program,
- the Accelerating Kids to Research Act, which would have made it easier for children from low-income families on Medicaid to receive specialized cancer treatment across state lines
- the Creating Hope Reauthorization Act, which would have extended a program incentivizing pediatric drug development that has already resulted in the development of 65 new medications
- the Give Kids a Chance Act, which would have allowed children with relapsed cancers to undergo treatments combining cancer drugs with other therapies
Despite members of Congress initially agreeing to include the above-described provisions, all mentions of pediatric cancer funding were removed from the final version of the spending package. Although the Gabriella Miller Kids First Research Act 2.0 was ultimately revised and passed as its own standalone bill, the other three provisions remain in limbo.
Unfortunately, Federal funding for pediatric cancer research has long been in short supply. According to the National Cancer Institute, only 4% of all government-allocated cancer research funds go towards pediatric cancer research. This despite the fact that pediatric cancers are the leading cause of death by disease in the U.S. for children and young adults under the age of 20. Further reducing the pediatric cancer community’s already limited resources jeopardizes the future of clinical trials, new therapies, and equitable care for all children facing cancer.
While the struggle to expand federal funding is ongoing, it’s clear that, for now, pediatric cancer researchers will have to continue depending on private donors and nonprofits like Pediatric Cancer Research Foundation to help them access the resources they need. Powering research, supporting survivorship, and ensuring equitable care are our guiding institutional priorities. To date, we have invested more than $61 million into research to accelerate cures and innovate new therapies.
“The reduction in research and care funding is a devastating setback for the pediatric cancer community, one that threatens all the progress we’ve made. This unfortunate turn of events only reinforces the urgent need for us to continue advancing care, supporting cutting-edge research, and improving conditions for pediatric cancer patients and their families,” Danielle Fragalla, the Chief Executive Officer of Pediatric Cancer Research Foundation, said.
“At the Pediatric Cancer Research Foundation, our work has never been more critical. Through our institutional priorities—Powering Research, Equitable Care, and Survivorship & Mental Health—we are committed to driving innovating solutions that not only improve outcomes but also ensure that every child and family has access to the support they need.”
If you would like to help us continue driving pediatric cancer research forward, consider becoming a donor. Additionally, we urge anyone concerned about the lack of federal funding available to the pediatric cancer community to take an active role in advocating for change. Make your voice heard; contact your state representatives and let them know how crucial federal funding is for fueling innovation in pediatric cancer research.
To stay up-to-date with all the latest news shaping the future of pediatric cancer treatment, don’t forget to follow the Pediatric Cancer Research Foundation Profectus blog.
