National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 4, No. 10

•    Budget Update: Take Action to Support Medical Research Funding
•    Pediatric Cancer Advocacy Shows Results
•    Advocates in Action: Precision Medicine Initiative
•    Vice President Biden's Commitment to Curing Cancer

Budget Update: Take Action to Support Medical Research Funding
This year, the brain tumor community advocated with their members of Congress to increase medical research funding through the National Institutes of Health (NIH) and National Cancer Institute (NCI), as well as make pediatric brain tumor research eligible for increased funding through the Department of Defense’s (DOD) Congressionally Directed Medical Research Programs. The advocacy paid off, and the proposed Fiscal Year 2016 budget includes an increase for NIH and NCI, as well as the inclusion of pediatric brain tumors as an eligible topic for funding in the Peer Review Cancer Research Program.

However, Congress did not pass that proposed budget before the new fiscal year began on October 1st, instead passing a continuing resolution, or CR, which allows the government to continue operating at Fiscal Year 2015 funding levels. That means that the funding increases proposed for NIH and NCI, as well as the inclusion of pediatric brain tumors in the Peer Review Cancer Research Program, will not go into effect until a new budget is passed.

Congressional budget staff and the White House are in talks now to come to an agreement, but Congress must pass a new, comprehensive Fiscal Year 2016 budget by December 11th if these funding increases and opportunities are to go into effect. Please contact your members of Congress now to ask that they pass a new budget that prioritizes medical research funding before their December deadline.

Pediatric Cancer Advocacy Shows Results
In September, we asked you to recognize Childhood Cancer Awareness Month by advocating with your members of Congress regarding the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (H.R. 3381/Reps. McCaul, Speier, Van Hollen, S. 1883/Sens. Reed and Capito).

Your legislators listened to your requests to support the bill and responded in large numbers. Fifty new co-sponsors added their support to the STAR Act in the House of Representatives, while two more Senators added their names in support of the bill. Congratulations on your successful advocacy!

In addition, members of Congress also signaled their support of oral chemotherapy parity legislation by co-sponsoring The Cancer Drug Coverage Parity Act (H.R. 2739, Reps. Lance and Higgins/S.1566, Sens. Kirk and Franken).

Please find links to bill co-sponsors below, including the dates they signed on to support the legislation. If your member of Congress is on the list, please give him or her a call or send an email sharing your appreciation! You can find contact information at this link.

The Cancer Drug Coverage Parity Act co-sponsors (HR 2739 & S. 1566)
The Childhood Cancer STAR Act co-sponsors (HR 3381
S. 1883)

Advocates in Action: Precision Medicine Initiative
Maryland advocates Lisa McDermott and Lisa Peabody attended the Advocates Luncheon: The Precision Medicine Initiative at the American Society of Human Genetics Annual Meeting on Wednesday, October 7, 2015 in Baltimore, Maryland. The meeting convened various stakeholders who are involved with the President’s Precision Medicine Initiative (PMI) to report out on the current strategy and progress.

Representatives from the White House discussed the reasons behind creating the initiative, which include keeping the United States in the forefront of research and healthcare, keeping citizens healthy, and stimulating the economy. They also discussed the need to consider the patient’s voice in all research and treatment, and the need to promote a climate of information sharing and collaboration between researchers.

Presenters at the meeting discussed the 1 million-person research cohort that is being established as part of the PMI. The purpose of the cohort is to create a database where all researchers will have access to the collection of cohort data and specimens for studies so that they may better understand the variables that contribute to health and disease. The cohort data will attempt to show patterns of a person’s health in a holistic approach including genetics and environmental factors. Ultimately, they expect these studies will translate into successful treatments tailored to individuals, which supports the goals of PMI.

National Brain Tumor Society will keep up to date on the developments of the initiative, especially as it may pertain to cancer and brain tumor treatment and research. A special thank you to our advocates for attending on behalf of the National Brain Tumor Society!

Vice President Biden’s Commitment to Curing Cancer
Last week, Vice President Joe Biden announced that he would not be running for President in 2016, but he did indicate what he would be doing over the next year:

I believe that we need a moon shot in this country to cure cancer. It's personal. But I know we can do this. The president and I have already been working hard on increasing funding for research and development, because there are so many breakthroughs just on the horizon in science and medicine, the things that are just about to happen. And we can make them real with an absolute national commitment to end cancer, as we know it today. And I'm going to spend the next 15 months in this office pushing as hard as I can to accomplish this, because I know there are Democrats and Republicans on the Hill who share our passion, our passion to silence this deadly disease.” -Vice President Joe Biden.

More from our blog here.

As many in our community are aware, Vice President Biden’s son, Beau Biden, passed away from a brain tumor in May of this year. We are reaching out to the Vice President’s office and hope to work with him to help make his commitment to ending cancer a reality.

Thank you again for all your support and advocacy!


David F. Arons, JD

Interim Chief Executive Officer

Lainey Titus Samant

Director of Advocacy and 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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