National Brain Tumor Society Public Policy and Advocacy Update

Vol. 5, No. 2

Head to the Hill Registration Deadline is April 3 - Sign Up Today

Taking Our Cause to Congress and the President: 2015 Legislative Agenda
At the Table: Our work with the Executive Branch

Head to the Hill – Sign Up Today!
This year we are working harder than ever to make the 2015 Head to the Hill bigger and better – and even more impactful than last year. As in 2014, all those who have signed up and show up will receive advocacy training on the issues and how to communicate with Congress. This year we have extended the training time on Monday May 4 to be from 9 AM to 5 PM, followed by a reception. We will take our cause to Congress on Tuesday May 5 and will be meeting with the offices of our Senators and Representatives. Please sign up yourself and this year – bring a friend, a family member or someone else to join you.

Taking Our Cause to Congress and the President: 2015 Legislative Agenda
As always our focus is to improve public policy so that it can help lead to better treatments and better quality of life for brain tumor patients. This year our goals are to ensure that brain tumor research funding from the federal government is increasing and to advance legislation that will improve drug development for both adult and pediatric brain tumors. And we will continue to fight for access to essential treatment by addressing high out of pocket costs for prescription brain tumor medicine. Please click here to see our 2015 legislative agenda. 

The new Congress convened in January and already there has been a flurry of new bills aimed at both of these goals. Two legislative initiatives stand out in particular. Representative Fred Upton of Michigan, Chairman of the House Energy and Commerce Committee and Rep. Diana DeGette of Colorado have led a highly inclusive effort to develop legislation aimed at improving patient input into the drug development process and to accelerate drug development called the 21st Century Cures Initiative. They have included in their legislation, a proposal by Rep. Michael McCaul of Texas  to help make it easier for doctors to secure not-yet-approved drugs for compassionate use. National Brain Tumor Society is working with Congressional staff to advocate for key provisions of the legislation and is urging improvements as well.

We are also encouraged by Rep. Rosa DeLauro from Connecticut and Sen. Barbara Mikulski’s (MD) legislation called the Accelerating Biomedical Research Act that would create a more stable funding platform for the National Institutes of Health including the National Cancer Institute (NCI).  As we have described before, even the small increases provided by Congress to the National Cancer Institute cannot keep pace with the rate of inflation, thus the number of grants awarded by the NCI has continued to decline.

Now is not the time for disinvestment in biomedical research. For example, thanks to the congressionally funded Cancer Genome Atlas (TCGA) project – we now know about how similar certain low-grade and high-grade brain tumors can be and what that could mean for future treatment approaches. 

At the Table: Our work with the Executive Branch
There is an old saying in Washington DC, “If you are not at the table, then you are on the table.”  This could not be more true than when it comes to working with federal agencies and the White House. Over the past four years we have been aggressive at making sure that the brain tumor community is well represented at the Food and Drug Administration and National Institutes of Health and other agencies. Our work with the executive branch in 2015 will focus on three things: 1) Better clinical trials: Implementing the plans that came out of our Clinical Trial Endpoints Workshops sponsored by the Jumpstarting Brain Tumor Drug Development Coalition in 2014. The goals for the “Endpoints Initiative” are the improvement of measurement of drug effectiveness in clinical trials under review by the FDA. If we accomplish these plans then we can better incentivize industry and improve drug development and approvals. 2) Fewer barriers to drug development and precision medicine research for children and adults. We are working with the agencies to de-risk early stage clinical trials in pediatric brain tumors so that companies will be more likely to invest in them and we are working to improve biospecimen collection and biomarker development for adult and pediatric precision medicine focused efforts. 3) More funding: We are advocating for strategic, science-based increases in the amount of resources that the NCI and NIH invests in brain tumor related research.

We will be both monitoring and reporting on key federal policy issues and advocating through letters, testimony and comments for the record throughout the year. Stay tuned for more information.

David F. Arons

Chief Public Policy & Advocacy Officer

Lainey Titus Samant

Associate Director

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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