Protecting Pediatric Brain Tumor Research

The Department of Defense’s Peer Reviewed Cancer Research Program has been an integral facilitator and supporter of cancer research since fiscal year 2009. This program facilitates high impact, innovative research to fund unmet needs in cancer research. Funding is granted only for initiatives that directly address the topics set forth by Congress.  In Fiscal Year 2016, Pediatric Brain Tumors were added as a strategic priority. Bladder cancer, lymphoma and Immunotherapy were also new initiatives for 2016.

A significant proportion of cancer research funding is supported via the Department of Defense’s Peer Review Cancer Research Program.

This year, The National Defense Authorization Act nearly included two provisions that would have dramatically limited pediatric brain tumor research.

  • Sec. 756 would have limited DoD research to benefit Members of the Armed Forces, only.
  • Sec. 898 would have required doctors and scientists performing brain tumor research to undergo the same review/audit/compliance process as those reserved for multi-million dollar weapons systems.

Pediatric Brain Tumors are the leading cause of solid tumor cancer death in children age 0-14. To learn more about why research is absolutely necessary, I highly suggest heading over to Humans of New York to read Brandon Stanton’s Pediatric Cancer Series.  In 18 days through social media, he raised almost $4 million for Pediatric Cancer Research and emotional/psychological support services at Memorial Sloan Kettering Cancer Center. The speed and amount of money raised by Brandon is unprecedented. Over 100,000 people donated after seeing pictures and reading real stories from patients, caregivers, physicians, nurses and hospital employees who fight the battle against pediatric cancer ever day. The Facebook posts were touching, gut-wrenching and raw.   This one, really got to me.  And this one, just devastating.

Access to clinical trials and translational research is critical in forging a path towards a cure. As I mentioned previously when discussing the National Brain Tumor Society’s Head to the Hill event, children are at a huge disadvantage when diagnosed with cancer because less research is funded for pediatric cancers.  This is particularly true in brain tumors where no standard of care exists for treating pediatric brain tumors.

Thanks to the amazing efforts of advocates around the country, access to funding for pediatric brain tumors has not been restricted. By picking up the phone and calling, sending letters and emails, and tweeting using the hashtag, #researchnotredtape, the Brain Tumor Community was heard. The American Brain Tumor Society reports that, “137 patient advocacy groups, medical societies, veterans groups, research advocacy organizations and colleges and universities” co-signed a letter that was distributed to all 100 Senators prior to voting on the bill.  Illinois Senator Richard Durbin brought forth a bi-partisan amendment that eliminated these two provisions, opening access to research.  It passed, 66-32 in the Senate, this June.

Here’s a video from the Senate Floor where you can learn more about why funding for critical cancer research is paramount.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice. 

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