Passing Ellie’s Law could help reduce brain aneurysms

Ellie Helton
Ellie Helton

One in 50 people in this country has a brain aneurysm, a condition that kills half a million people worldwide each year. The next time you are in a setting with 50 people – at a mall or waiting for an Uber, for example – think about the fact that one of those 50 people, often someone who is young and seemingly healthy, harbors a brain aneurysm that, if it bursts, will cause sudden death or lifelong disabilities.

One of the more tragic cases is that of Ellie Helton, a 14-year-old girl from Apex, who died on July 16, 2014 from a ruptured brain aneurysm. The Brain Aneurysm Foundation, which was founded in 1994, has been working with the Helton family and many others impacted by brain aneurysms to increase federal funding of brain aneurysm research.

For every well-known name in the news, there are thousands of other Americans dealing with the tragic consequences of ruptured brain aneurysms, which include not only death and disability but also loss of livelihood and income.

A brain aneurysm is a weak, bulging area in an artery that, if it ruptures, causes bleeding that damages the brain. Brain aneurysms sometimes cause symptoms, such as severe headaches, but they are often detected when a patient is undergoing imaging tests for a different health problem. More often than not, the first time someone discovers he or she has a brain aneurysm is when it ruptures. And for many, by then it is too late. For the six out of 10 who survive this catastrophic event, two-thirds are either dependent on others for their total care or have significant, long-term neurologic deficits.

It is estimated that the combined lost wages of survivors of brain aneurysms and their caregivers is about $138 billion a year, to say nothing of the costs of medical care. Yet despite its enormous human and financial toll, the U.S. government spends virtually nothing on research to understand how brain aneurysms develop and how to detect, prevent or treat them and their often-devastating consequences.

After years of educating Congress through our advocacy efforts, the seeds that we and our many supporters planted are beginning to bear fruit. Ellie’s Law (H. Res. 1648) would provide $25 million over five years to fund brain aneurysm research. Ellie’s Law is bipartisan, led by Reps. Yvette Clarke, a New York Democrat, and Patrick Meehan, a Pennsylvania Republican. Sen. Richard Blumenthal, a Democrat from Connecticut, is committed to introducing a companion bill in the Senate.

It is time to move past awareness and toward policy steps that will have an impact. In fact, the Brain Aneurysm Foundation will be holding its annual symposium on Sept. 28 in Durham. This year’s guest speaker will be Brain Aneurysm Foundation Medical Advisory Board member L. Fernando Gonzalez, MD, Co-Director of Cerebrovascular and Endovascular Neurosurgery and Associate Professor of Neurosurgery at Duke University.

The Brain Aneurysm Foundation is the largest private funder of brain aneurysm research in the United States, thanks to the dedication and generosity of thousands of supporters. Thus far, we have distributed $2.1 million in research grants raised solely through private contributions. But this is not enough: The passage of Ellie’s Law is critical to turning the tide against this serious public health challenge.

Our country remains entrenched in a multi-year, highly politicized public-policy fight about how to improve health care for all Americans, while vitally important issues like medical research funding get almost no attention. But we cannot forget victims like Ellie Helton, who would be a high school senior and looking ahead to a lifetime of possibilities. In September, Congress will be back in session, looking for health care solutions. Ellie’s Law should be one of those solutions.

Christine Buckley is the executive director of the Hanover-based Brain Aneurysm Foundation. Christopher S. Ogilvy, MD, is the director of the Beth Israel Deaconess Medical Center Brain Aneurysm Institute and a Professor of Neurosurgery at Harvard Medical School, Director of Endovascular and Operative Neurovascular Surgery at Beth Israel Deaconess Medical Center, and a co-founder of the Brain Aneurysm Foundation.