National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 4 No. 8

  • Advocates Make an Impact in August!
  • Update on Congressional Budget Process
  • Recent News About the Clinical Trials Endpoints Initiative

Advocates Make an Impact in August!
Our advocacy stars shined bright this month as they visited their members of Congress to advocate for the brain tumor community during the August congressional recess. Advocates educated themselves on the issues, contacted district offices to schedule appointments, and asked their representatives for funding for NIH and NCI, oral chemotherapy parity, and support for the Childhood Cancer STAR Act. Here is a sampling of some of the meetings that took place this month:

  • Shanae Jennings, Texas State Lead Advocate, pursued an August recess meeting with Congressman Michael Burgess, M.D., and was given the chance to meet with him directly. Shanae was able to educate the Congressman on the issue of oral chemotherapy parity, and he promised to follow up with the lead sponsor of the bill when he returned to Washington.
  • Lisa Peabody, one of our Maryland Advocacy Ambassadors, has been building a relationship with a staff member from Congressman John Delaney’s office for a number of months. Last week, she was able to meet with that staff member and the Congressman, who had been fully briefed on our policy issues. In that meeting, the Congressman promised to sign on as a co-sponsor to the Childhood Cancer STAR Act, as well as to join the Congressional Childhood Cancer Caucus.
  • New Hampshire State Lead Advocates Patti and Ron Gauvin met with staff from Sen. Kelly Ayotte's office to ask the Senator for her support of legislation that will positively impact the brain tumor community. Just 24 hours later, Senator Ayotte committed to cosponsoring the STAR Act.
  • John Driscoll and Christine Titus from Massachusetts met with freshman Congressman Seth Moulton’s district staff and were joined on the phone by his health aide from his Capitol office. While we value those members who have been supporting our legislative agenda for many years, it is also important to educate new members who may become your champion in the future – this was a great opportunity for John and Christine to do just that.
  • Despite having just moved to the state, Adrienne Wilk conducted a meeting with Senator Michael Bennet in Colorado.

Thank you and congratulations to all of our advocates who took part in August recess by visiting, calling, or emailing their members of Congress. To see photos from some of the meetings, please visit our Facebook event page.

Update on Congressional Budget process
With the August recess winding down, Congress will head back to Washington, D.C. to discuss many of the pending issues before them. Unfortunately, that will not include the Fiscal Year 2016 budget. Instead, Congress is likely to pass a “Continuing Resolution” extending the current funding levels and programs into the new fiscal year, which begins on October 1st. A timeline for passing the Fiscal Year 2016 budget should be included as part of the Continuing Resolution process. The delay will mean that the increase to NIH and NCI funding, as well as the inclusion of pediatric brain tumors among the eligible topics for funding in the Department of Defense's Peer Review Cancer Research Program, both of which were included in the House and Senate versions of the Labor and Health and Human Services budgets, will be delayed until a new budget is passed. We will keep you posted as the process continues and ask you to contact your members of Congress at the appropriate times. 

Recent News about the NBTS Clinical Trial Endpoints Initiative
Over the past 12 months, NBTS has led a coalition of partners (Society for Neuro-Oncology, Musella Foundation for Brain Tumor Research, and Accelerate Brain Cancer Cure), and experts from neuro-oncology, neuro-radiology, FDA, and NCI, to develop recommendations for a standardized brain tumor imaging protocol to reduce variability in the acquisition of data and build confidence in the use of imaging-based endpoints for drugs seeking FDA approval. As a result of this effort, a proposed consensus standard protocol for brain tumor imaging in clinical trials was developed and has just been published in the journal Neuro-Oncology*. The availability of this new standard imaging protocol will provide clarity for the clinical research community in their future implementation of imaging based response assessment in brain tumor trials. Standardization will help reduce variability and improve the value of using imaging endpoints to meet the metrics of regulatory authorities and may also facilitate the use of accelerated regulatory pathways for approval of treatments based on alternative endpoints. The cumulative impact of this effort will be to increase clinical trial efficiency, reduce costs and deliver promising new treatments to brain tumor patients faster.

To read more about these exciting developments please check out this recent blog post on our website.

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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