Guest post from Christine J. Buckley
Executive Director, Brain Aneurysm Foundation
On March 27, 2019, the Brain Aneurysm Foundation (BAF) led a delegation of over 120 brain aneurysm survivors, family members, advocates, and medical professionals from 23 different states to Washington D.C. for the BAF’s 8th Annual Advocacy Day on Capitol Hill. This year’s annual trip included visits to close to 150 legislative offices in support of H.R. 594/S. 864, Ellie’s Law, a bipartisan bill that seeks federal funding for brain aneurysm research.
Many people do not realize that, relative to the number of Americans affected, brain aneurysms are one of the most underfunded diseases for research in the United States. Consider the following facts:
- Ruptured brain aneurysms carry a high toll in terms of death and disability. The consequences of this disease are grave, with tremendous loss of life, decreased quality of life for survivors, and the long-term medical and social costs for affected families.
- Although more than six million Americans are afflicted with a brain aneurysm, the federal government only spends 83 cents per year per person on aneurysm research.
- The cost of ruptured aneurysms is enormous: Lost wages of survivors of brain aneurysm ruptures and their caretakers total nearly $150 million per year.
Introduced by Reps. Yvette Clarke (D-N.Y.) and Peter King (R-N.Y.) and Sen. Richard Blumenthal (D-Conn.), Ellie’s law was drafted in consultation with members of the brain aneurysm medical and research community. The bill is named in honor of Ellie Helton, a 14-year-old Apex, N.C. teenager, who died on July 16, 2014, as a result of a brain aneurysm. Both bills would provide $25 million over five years for the National Institute of Neurological Disorders and Stroke (NINDS) to support comprehensive research on brain aneurysms, including studying the broader population affected by brain aneurysms diversified by age, sex and race. The bills also include funding for research to identify the causes of aneurysms and aneurysm ruptures, as well as the development of new drugs and other aneurysm treatments. In the context of the National Institutes of Health’s $39 billion budget for 2019, this is a minuscule amount — just 0.0128 percent, or about one-eightieth of one percent of the total budget. If passed, Ellie’s Law has the potential to have a significant impact: by helping the progress of scientists and clinicians in their investigations of brain aneurysms, Ellie’s Law can lead to decreased ruptured aneurysms and more saved lives.
We all have a stake in this deadly disease and share the responsibility to reach out to our congressional representatives for their support of Ellie’s Law. Although the statistics tell us that one out of every fifty people lives with an unruptured brain aneurysm, it is easy to forget that one individual often has a spouse, children, parents, siblings and friends. In other words, many more individuals are connected to the one — and should the aneurysm rupture, their lives, too, will be forever changed. For the one that you may know or will come to know, I ask you to please seek support of Ellie’s Law from your representatives so that scientists and researchers can have the necessary resources to end the devastation caused all too often from brain aneurysm ruptures.
Please let your Congressmen and Senators know that if they have questions about becoming a sponsor they can contact a lead at each of the sponsoring offices.
To track the progress of those who do sign on as a cosponsor, you can look here:
The Brain Aneurysm Foundation thanks you (and organized neurosurgery) for support of this legislation that will save lives! Let’s reduce the 30,000 ruptures a year. Let’s keep families together. Let’s keep people in the workforce. Let’s be the difference. Remember, brain aneurysms are treatable, but we need to make sure the right people have the right resources to do the necessary research.
Please follow bafound.org to stay current on all things related to brain aneurysm awareness, education, support, advocacy, and research funding. I hope to see you on the Hill next year!
Editor’s Note:We encourage everyone to join the conversation online by using the hashtag #VascularNeurosurgery.