National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 4 No. 6

  • Oral Chemotherapy Parity Introduction – You Did It!
  • 21st Century Cures Act – Changing the Landscape
  • NIH/NCI Appropriations Update
  • STAR Act – Coming Soon!

Oral Chemotherapy Parity Introduction – You Did It!
You used your voice to let Congress know that brain tumor patients should not have to pay excessive costs for essential oral chemotherapy treatments. Good news: Congress has listened! Many of you educated Congress about the importance of being able to afford brain tumor medicine at Head to the Hill this year and urged that Senators and Representatives support oral chemotherapy parity legislation. We are excited to report that the Cancer Drug Coverage Parity Act has been introduced in both the House (H.R.2739 Reps. Lance and Higgins) and Senate (S.1566, Sens. Kirk and Franken). This took a tremendous collective effort from the brain tumor community and our partner organizations with the Patients Equal Access Coalition (PEAC). These victories are the clearest example of the critical impact your advocacy efforts have on influencing Congress to take action. This is just the beginning stage to getting these bills passed, so stay motivated and watch out for an action alert coming soon!

21st Century Cures Act – Changing the Landscape
After more than a year of work among the House of Representatives’ Energy and Commerce Committee – and with input from patients, medical professionals, researchers, and advocacy groups, to include the National Brain Tumor Society – the 21st Century Cures Act has been introduced in the House and voted out of the Energy and Commerce Committee. The Act continues to gain overwhelming support from both Republicans and Democrats, demonstrating a critical bi-partisan commitment for advancing healthcare innovation into the 21st Century. The comprehensive legislation is a significant step forward for policies that will support our efforts to deliver new, effective treatments, and ultimately a cure, for brain tumors. Later this week, be on the lookout for an email providing an explanation of how this legislation impacts the brain tumor community.

NIH/NCI Appropriations Update
Thanks to your advocacy efforts, the House and Senate Appropriations Committees have made funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) a top priority. The chambers both put forth appropriations bills that would increase the NIH’s budget. The House bill would provide a $1.1 billion increase, while the Senate bill calls for a $2 billion increase. In addition, the NCI would receive a slight increase to $5.08 billion in the House bill and $5.2 billion in the Senate bill. Though we are encouraged by the increases, they are still below the funding targets NBTS had advocated for of $33 billion for the NIH and $5.44 billion for the NCI. We will continue to stay on top of the appropriations process and ask you to take action when the time is right.  

STAR Act – Coming Soon!
As part of the Alliance for Childhood Cancer, the National Brain Tumor Society has worked with other pediatric cancer advocacy groups to develop the Conquer Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act – comprehensive childhood cancer legislation that will strengthen federal policy on research, drug development, and survivorship/quality of life-related care. During the Alliance’s Action Day in June, we stood with our advocacy partner organizations to urge congressional support for this bill and were encouraged by the bi-partisan support from key Members of Congress. Once the legislation is finalized, we will do a special email to educate you about the act and our strategy for pushing it through Congress. 

Thanks again for all your support and advocacy! Together we are making a difference!

David F. Arons, JD

Chief Public Policy
and Advocacy Officer

Lainey Titus Samant

Associate Director

Tyler Gately

Manager of Advocacy
and Volunteer Leadership

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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