National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 5,  No. 3

  • Advocate for the Brain Tumor Community in August (In Your Community)
  • Congress Continues to Increase NIH Funding FY 17 Budget Bills
  • Get Ready for September to Push Hard for the Childhood Cancer STAR Act
  • NBTS Advocates Go tot he National Cancer Moonshot Summit and FDA
  • Let's Welcome Mike Smith - New State Lead Advocate for NY


Advocate for the Brain Tumor Community in August (In Your Community)
The month of August is an ideal time to seek out your members of Congress and urge them to take action on our legislative agenda to advance brain tumor research. The best way to go about getting time with your Members is to work with us to help you form a group to have a meeting with other brain tumor advocates from your community. Please contact Kacey as soon as possible to take advantage of this opportunity. No time to join a meeting, but you feel like you could stop by your Member of Congress’ office to leave behind some materials? Then please download our August Recess Advocacy toolkit and locate the closest office of your U.S. Senator or Member of the House of Representatives by going to www.senate.gov or www.house.gov.

Congress Continues to Increase NIH Funding in FY 17 Budget Bills
Thanks to your advocacy Congress is hearing us loud and clear that we want increases in funding for research. Recently the House Appropriations Subcommittee for Labor-Health and Human Services that funds the National Institutes of Health provided an over $1 billion increase in funding following the Senate’s over $2 billion increase last month in their proposed bill for 2017. Congress has signaled its intent and beginning in the fall we will need to keep urging Congress to follow through on a budget bill that delivers that funding including $680 million for Vice President Biden’s Moonshot initiative. Be on the look out for an action alert!

Get Ready for September to Push Hard for the Childhood Cancer STAR Act
After a steady increase in co-sponsors in the House of Representatives for the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (HR 3381), the bill now has 247 co-sponsors and is poised for a vote. The Senate companion bill has 22 co-sponsors (S1883).  This is the most comprehensive childhood cancer legislation assembled in decades and would help pediatric brain tumor research and the care of survivors. There are 2 things we can do help advance the bill: 1. We can take action in August by writing to our Members of Congress and visiting them in their home offices to let them know that it is time to pass the Childhood Cancer STAR Act; and 2. When September arrives and it is Childhood Cancer Awareness Month, we need to be ready for a big push with phone calls and more letters to Congress. We’ll get you ready! Read about the STAR Act here and Take Action on our website

NBTS Advocates Go to the National Cancer Moonshot Summit and FDA
We are proud of our advocates that attended Vice President Biden’s National Cancer Moonshot Summit in Washington DC in late June and those that attended our regional moonshot event in Boston. Through our volunteers, NBTS is able to be active and at the table during the Moonshot effort. The next step for the effort is the scientific Blue Ribbon Panel is finishing its recommendations for projects to accelerate cancer research. If funded, the ideas in the moonshot effort will help make progress and follow through on our collective desire to speed up research. 

NBTS was also privileged to have sent three out of the five parents/advocates who stood before the U.S. Food and Drug Administration’s (FDA) Pediatric Subcommittee to the Oncology Drugs Advisory Committee to weigh-in on the critical topic of pre-treatment biopsy of diffuse intrinsic pontine glioma (DIPG) patients. To take advantage of this rare opportunity for advocacy, NBTS provided a written statement for the record, and also sent three volunteer advocates on its behalf to testify before the Subcommittee – all three were parents of children lost to brainstem gliomas, two specifically to DIPG. One volunteer advocate, also a member of the NBTS Board of Directors, in addition to his own personal remarks, read NBTS’ statement aloud to the panel. Read the NBTS statement here.


Our three volunteers were joined by two other parents who had lost children to DIPG tumors, two pediatric specialists from within the FDA (a pediatric ethicist and pathologist), and three leading DIPG specialists from leading hospitals across the country (Dr. Mark Kieran of Dana-Farber Cancer Institute/Boston Children’s Hospital; Dr. Nalin Gupta of the University of California, San Francisco; and Dr. Jeffrey Leonard of Nationwide Children’s Hospital).

The consensus of all of those testifying seemed to line-up with NBTS’ own position on the topic: Given the fatality of the disease and the dismal prognosis for DIPG patients, there is a clear need for incorporating biopsy of these tumors as part of practice at top pediatric centers – where possible and consented – to not only provide benefit for the patient from whom the biopsy was obtained but to also benefit all DIPG patients in the future.

Let's Welcome Mike Smith - New State Lead Advocate for NY
In addition to being a brain tumor survivor himself, Michael also unfortunately lost both his wife and brother-in-law to brain tumors. Shortly after the passing of his wife in 2011, Michael got involved with NBTS through the annual New York City Brain Tumor Walk to honor of his wife and a brother-in-law, as well as our annual Head to the Hill advocacy event. Michael has participated in the New York walk and Head to the Hill ever since and has developed a terrific rapport with NBTS staff.

Michael has found joy and interest in combining his public speaking skills with the opportunity to make a difference for future patients, and has put this to practice advocating for NBTS’ legislative agenda with his members of Congress – both at their Washington, D.C, offices and when their home in his district. 

In becoming the NBTS’ volunteer State Lead Advocate for New York, Michael hopes to recruit as many advocates from the State of New York as possible to raise their voices for the brain tumor cause. In fact, at this past June’s New York City Brain Tumor Walk, he already recruited two more advocates for the 2016 Head to the Hill! If you live in New York and want to get involved, email Kacey to put you in touch with Michael. 

Thank you again for all your support and advocacy.

David F. Arons, JD

Chief Executive Officer

darons@braintumor.org

Lisa Peabody

Public Policy Associate

lpeabody@braintumor.org

Kacey Troy
Research and Advocacy Manager

ktroy@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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