Brain tumors have unacceptably low survival rates and exceedingly high medical costs, often leaving survivors suffering from lifelong functional deficits. In order to see improved outcomes, brain tumor advocates are targeting the largest funders of medical research: the federal government.
On May 9, I joined over 300 advocates from 38 states for “Head to the Hill,” an annual lobbying day in Washington, D.C., organized by the National Brain Tumor Society. In just one day, we held 223 meetings with our Congressional leaders and had two asks: Increase National Institutes of Health (NIH) funding by $2 billion for the fiscal year 2018, and sign on to the Childhood Cancer STAR Act (S 292/HR 820).
Over the last 30 years, just four therapies and one medical device have been approved to treat brain tumors in adults. And, currently, there is no standard of care for pediatric brain tumors, which are the leading cause of cancer death in children.
Simply put, we need to do more, and faster—and for this, the NIH is crucial. Private philanthropy alone cannot provide the coordination and mechanisms necessary for progress.
As our leaders debate various visions for the future of health care, it’s easy to be scared by the potential implications. Amid the uncertainty, it’s even more important that patients step up and share our stories with elected leaders and be civically engaged at all fronts. We must put a face to those living with pre-existing conditions—even those that are invisible and stigmatized.
ABOUT MEDICINE X | CITIZEN: To be a #medx citizen is to have a voice, no matter who you are. CITIZEN aims to be a guide to the people and action in the Medicine X community that are shaping the evolving health care conversation. Entries in this series are not an endorsement of the people or actions featured.