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Advocating for Childhood Cancer Cures

National Brain Tumor Society is driven to create change for the more than 4,000 children and their families who will receive the terrible diagnosis of a pediatric brain tumor this year. In addition to our funded initiatives, we also are committed to working with the greater pediatric cancer community to help advance research toward new treatments and cures for pediatric brain tumors and cancers. And in mid-September, the National Brain Tumor Society was invited to take part in various meetings and events as part of Childhood Cancer Awareness Month.

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Lainey Titus Samant

Our slate of pediatric cancer policy events began with National Brain Tumor Society staff, Board Members, and advocates attending “A Golden Toast”, a reception that honored the co-chairs of the Congressional Childhood Cancer Caucus, Congressman Michael McCaul (R-TX) and Congressman Chris Van Hollen (D-MD). The Congressmen thanked the advocacy community for their tireless efforts and pledged to continue working with us in the coming year to make further advances.

The following day, Congressmen McCaul and Van Hollen hosted the 5th Annual Childhood Cancer Caucus Summit, entitled “Pediatric Cancer: Major Advances, Major Challenges”, at the US Capitol. The highlight of the event was a presentation by Dr. Francis Collins, Director of the National Institutes of Health (NIH). In addition to updating the audience of childhood cancer advocates on recent initiatives at NIH, he also talked about the current funding crisis and lost research opportunities they have been unable to pursue due to limited funding. When looking at the NIH budget adjusted for inflation, the current funding level is 23% below the purchasing power the agency had in 2003. Although Dr. Collins was appreciative of the Congressional effort to double the NIH budget between 1999 and 2003, a consistent and predictable rate of growth would have actually been more favorable. Since the 1970’s, the standard yearly rate of growth for the NIH budget was the rate of inflation plus 3.7%. If we had stayed on that trajectory, which Collins suggested would have been healthy for biomedical research as stability matters a great deal when you’re trying to encourage investigators to take risks, the current NIH budget would be $10 billion above where we are right now. [Click here to ask Congress to prioritize critical biomedical research funding.]

Collins believes that the promise of medical research has never been greater, but the level of support currently being given is not making advances possible at the speed it could. Collins encouraged the assembled advocates to continue raising our collective voices to push Congress for increased funding and push the NIH for more progress. Collins closed his remarks by saying, “I will do everything I can, when opportunities arise in childhood cancer research, to make sure we move at the fastest pace that we can.”


The White House

Later that afternoon, National Brain Tumor Society Public Policy staff attended a meeting of pediatric cancer advocates at the White House. This was a terrific opportunity, as it marked the first time pediatric cancer advocates were invited to the White House by an administration. The meeting included a keynote address by Dr. Harold Varmus, Director of the National Cancer Institute (NCI), during which he announced a new pediatric clinical trial program that will be launched by NCI in 2015. Led by the NCI-funded Children’s Oncology Group, the Pediatric MATCH trial will enroll children with advanced cancers that have progressed on standard therapy, and DNA sequencing will be used to identify children whose tumors have a genetic abnormality for which either an approved or investigational targeted therapy exists. National Brain Tumor Society looks forward to hearing more about the Pediatric MATCH trial in the coming months as development continues and details on a timetable for launch or patient enrollment are made available.


U.S. Capitol Building

Additionally, Dr. Varmus announced the nomination of a pediatric oncologist to its NCI Council of Research Advocates, of which National Brain Tumor Society’s Chief Public Policy & Advocacy Officer David Arons is also a member. Dr. Greg Aune of the University of Texas Health Science Center received this appointment, which underscores the institution’s commitment to pursuing research and treatment for pediatric cancer.

In addition to the Childhood Cancer Caucus Summit and the White House meeting, National Brain Tumor Society staff joined with other members of the pediatric community for a Public Policy Roundtable to set goals for the community and determine the best public policy strategies to reach those goals. The discussion was very productive and, in the coming months, will continue as a way to channel the passion of the pediatric cancer community into concrete action steps.

For our cause, the most significant take away, and one we are very appreciative of, is that during the week of meetings the NIH and NCI both acknowledged that advances are desperately needed in the field of pediatric brain tumors, and more must be done by policymakers to help move the needle. This is an important recognition that our collective voices have been heard.

We were grateful for the opportunity to engage with the leaders in medical research in the United States, and look forward to working with them, along with the pediatric cancer advocacy community, to increase medical research discoveries and advance the development of effective treatments for pediatric brain tumor patients.

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