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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 3, No. 9
September 2013
  • Advocating for Cures, Not Cuts
  • Improving the Lives of Pediatric Patients
  • CA Closer to Becoming 27th State to Enact Oral Chemotherapy Parity 

Advocating for Cures, Not Cuts
On September 18, the National Brain Tumor Society joined over 150 other cancer organizations on Capitol Hill for the Rally for Medical Research advocacy day. Led by the American Association for Cancer Research, the mass mobilization of these patient and research-based organizations was quite timely given the current budgetary climate and discussions between the House and Senate who are working on both a temporary appropriations bill, called a continuing resolution, as well as a full year spending bill for fiscal year 2014. Although the House and Senate leadership continue to debate major differences, investment in medical research, including funding for the National Institutes of Health (NIH), the largest funder of brain tumor research, seems to have garnered bipartisan support. Let’s keep up the pressure to protect and invest in NIH to strengthen brain tumor research. Please take action today!

Improving the Lives of Pediatric Patients
National Brain Tumor Society continues to invest heavily in research for both adult and pediatric brain tumors, which are aimed at finding new treatments, as well as the discovery of a cure. As you know, our current pediatric research programs are focused on analyzing the development of a child’s brain to then identify which therapies could be effective, as well as minimize long-term and adverse side effects. Through our participation in the Alliance for Childhood Cancer, we also recently signed on to support the following new legislation:

  • The Childhood Cancer Survivors’ Quality of Life Act, which would provide investments in research and workforce development to better support the psycho-social needs of pediatric brain tumor patients.
  • The Caroline Pryce Walker Conquer Childhood Cancer (Reauthorization) Act would stimulate biobanking of tissue, which is vital to improving research.

California Closer to Becoming 27th State to Enact Oral Chemotherapy Parity 
Earlier this month, the California Senate and Assembly both passed oral chemotherapy parity legislation, sponsored by Assembly Member Henry Perea (D-Fresno), which would require health insurance providers to make oral chemotherapy more affordable. Liz Salmi, National Brain Tumor Society’s State Lead Advocate for California, played a key role in this development by working with a coalition of local groups and testifying on behalf of the legislation. Next, the bill would need to be signed by Governor Jerry Brown prior to October 13 to become law. While this legislation is not perfect, it will ensure that brain tumor patients who currently pay higher co-pays or co-insurance for temozolomide (brand name: Temodar) will only pay a maximum of $200 per month beginning in 2015. TAKE ACTION NOW: If you are a California resident, ask Governor Brown to sign this important piece of legislation.

Thanks again for your support and taking action with the National Brain Tumor Society.

David F. Arons 
Senior Director of Public Policy 
darons@braintumor.org

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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