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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 6

June 2014

  • Advocating for Pediatric Cancer Research & Drug Development
  • 21st Century Cures Initiative
  • Your Experience. Your Voice. Brain Tumor Patient & Caregiver Survey

Advocating for Pediatric Cancer Research & Drug Development

On Tuesday, June 24th, the National Brain Tumor Society was in Washington, DC with 250 advocates from across the country to ask Congress for a stronger commitment to defeating childhood cancer.

The goal of the Alliance for Childhood Cancer’s Action Day was to advocate for:

  • Increased funding of the National Cancer Institute (NCI), the primary funder of pediatric cancer research
  • Support of the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, which would facilitate new drug discovery and development in pediatric cancer through the collection of biospecimens and statistical data, as well as call for a report to Congress on the barriers to pediatric cancer drug development

While approximately 60% of funding for adult clinical research comes from the biopharmaceutical industry, the private sector contributes almost 0% of the investment in pediatric oncology, leaving NCI as virtually the only source of funding for clinical trials in children with cancer. Therefore, cuts in recent years to the NCI budget have had a disproportionally greater effect on pediatric drug development. 

That’s why, in addition to advocating for increased funding for the NCI and federally funded pediatric research, the National Brain Tumor Society’s newest pediatric drug development initiative, Project Impact, aims to leverage the pediatric cancer community, the biopharmaceutical industry, and government on a integrated, full-scale project to aggressively target pediatric brain cancers for therapeutic development. 

Will you join us in advocating on behalf of kids fighting brain tumors? Click here to tweet your members of Congress and ask that they increase funding for the NCI and pass the Caroline Pryce Walker Conquer Childhood Cancer Act.

Congress’s 21st Century Cures Initiative

Recently, the United States House of Representatives’ Committee on Energy and Commerce launched an initiative to take a comprehensive look at what steps can be taken to accelerate the pace of cures in America. The goal of the 21st Century Cures Initiative is to examine every step along the way from the laboratory to the patient, including the discovery of clues in basic science, streamlining the drug and device development process, and unleashing the power of digital medicine and social media at the treatment delivery phase. The Initiative offers an outstanding opportunity for us to work with this powerful House committee while it is at the “drawing board” in developing new policy aimed at helping advance medical research toward new treatments that can help patients. 

National Brain Tumor Society recently responded to the House Committee on Energy and Commerce's request for comments on their Initiative to ensure that the voice of the brain tumor community was a major part of the conversation. To read the letter, follow this link.

Your Experience. Your Voice. Brain Tumor Patient & Caregiver Survey

As we all know, brain tumors can have serious impacts on a patient’s quality of life, including impaired cognitive and motor functions. While our primary goal is to find treatments that allow patients to live longer, and ultimately find a cure, we are also committed to helping bring treatments to market that help patients retain a sense of self and quality of life. Brain tumor patients and caregivers have a right to have their views known about what they want in future treatments being developed and brought to market. And, together with the Jumpstarting Brain Tumor Drug Development Coalition, we plan to deliver a report to stakeholders including policymakers, drug developers, researchers, and clinicians, about the needs and concerns of the brain tumor community. 

This is where your help is vital. In order for us to accurately represent the needs and concerns of the brain tumor community to key stakeholders, we ask that you complete this brief, anonymous questionnaire. We look forward to hearing from our community.

As always, thank you for your support. Together, we are making a difference in the fight against brain tumors.

David F. Arons
Senior Director of Public Policy

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow. This means effecting change in the system at all levels. It's time to build on progress and transform tomorrow today.

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