National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 2. No. 6
June 1, 2012
• Legislation Poised To Improve Pathway for Brain Tumor Treatments
• NIH Appropriations – More Pressure Matters
• The Affordable Care Act – Countdown to Decision
• Advocate of the Month
Legislation Poised To Improve Pathway for Brain Tumor Treatments
We are very pleased to let you know that the U.S. House and Senate respectively passed legislation recently that makes some significant improvements to the Food and Drug Administration’s (FDA) ability to review and ultimately approve treatments. As you know – only 4 different therapies in 30 years have been approved for brain tumors. This is not acceptable. While a big part of the problem is the need to discover what will kill brain tumors, the FDA’s lengthy and complex review process can be a significant barrier to approving new treatments. In addition, the FDA needs greater resources and authority to accelerate review and approval of drugs. Earlier this year, we partnered with the National Organization on Rare Disorders and Friends of Cancer Research to support legislation that will create a new breakthrough therapies designation, creating an all-hands-on-deck approach to the approval process for drugs aimed at treating life-threatening diseases.
The legislation, known as the Prescription Drug User Fee Act (PDUFA), also provides important incentives for conducting studies of how adult anti-cancer medicines would impact children and the version in the House will give the FDA an opportunity to reduce drug approval processes for certain rare pediatric diseases including brain tumors. The legislation is expected to become law in the next few weeks. It is a victory for our cause because it improves the landscape by generating more attention for up and coming investigational drugs which in turn should expedite the overall approval process, and make new treatments available, sooner. For more information read our bill summary and analysis.
NIH Appropriations – More Pressure Matters
It is highly likely that the last appropriations bill passed this year will be one that includes funding for the National Institutes of Health (NIH) – the largest funder of brain tumor research in the country. In fact, on Tuesday, June 12, the Senate Labor-HHS-Education Appropriations Subcommittee passed its FY 2013 spending bill, which included a $100 million increase in funding for NIH. The full Senate Appropriations Committee will take the bill up next.
Recently, we joined the American Association for Cancer Research and over 100 national cancer organizations, cancer centers and research institutions in signing a letter to congressional leadership urging Congress to make funding for the NIH a priority in the FY 2013 spending bills. We need to let our Members of Congress know how critical their support for brain tumor research through NIH funding is. Take 1 minute today to contact your elected officials on this matter.
The Affordable Care Act – Countdown to Decision
Later this month, we are expecting a decision from the U.S. Supreme Court regarding the future of the Patient Protection and Affordable Care Act, also known as health care reform. There are two things you need to know right now. First, the National Brain Tumor Society is watching. When the decision comes out, we will let you know and we will analyze the decision as it relates to the brain tumor community. Second, no matter what the decision is, the fight for increased availability of essential health care services is far from over. We will work with you, the patient and caregiver community, to identify what is needed and advocate for essential health care services.
Advocate of the Month
We could not successfully advocate for the critical brain tumor policy issues you read about in your monthly updates without the hard work of each and every incredible brain tumor advocate across the country. To honor the dedication of our volunteer advocates, we will select an advocate of the month and showcase their dedication to fighting brain tumors and to this community.
This month, we honor BethAnn Telford, Race for Hope Team BT team captain. BethAnn has taken her leadership in the Race for Hope community even further by advocating for policy issues that are critical to the brain tumor community and spreading the word about her advocacy through her strong networks and personal connections. For the past two years, BethAnn has traveled to Washington to participate in our annual advocacy day, Head to the Hill. She is fighting back and leading others to do the same. Hear from BethAnn as she shares her experiences as an advocate in this video.
BethAnn, we thank you for all that you do. You are an advocate, a leader, and an inspiration to the brain tumor community and all who meet you!
Thanks again for all your support,
David F. Arons, J.D.
Director of Public Policy
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