Guest post from Christine J. Buckley
Executive Director, Brain Aneurysm Foundation
Brain aneurysms continue to be the underdog in the world of stroke in every way: awareness, education, advocacy and research funding. With one in 50 people in the United States walking around with an undiagnosed brain aneurysm and 30,000 people experiencing a rupture — and half of them dying — much needs to be done to improve the odds.
Fortunately, many people are working together to turn the tide. This includes the Brain Aneurysm Foundation (BAF), patients, caregivers, family members and medical professionals.
Early in March 2018, I had the pleasure of participating in two momentous events as the leader of the BAF. Each helped to make strides toward improved treatment, education and research funding.
The first involved a Neurological Devices Panel of the Medical Devices Advisory Committee, a vital part of the Food and Drug Administration (FDA). The goal of this hearing was to advocate to the FDA regarding the importance of giving well-informed patients and well-trained physicians greater access to different treatment options for brain aneurysms.
Although many devices are manufactured in the United States, often they are first tested and validated overseas. However, it can still take up to eight years for FDA approval through our domestic regulatory pathways. It remains unknown whether our advocacy (along with that of many others) will lead to any changes in regulatory processes that would allow the FDA to bring neurological devices to market faster. Our experience suggests that such endeavors can expand treatment options for patients and may lead to dramatically improved outcomes as well. I was honored to represent the 50,000-plus members of the BAF, as well as to add my voice to those of physicians, researchers, survivors and family members. Together, we delivered a unified message to the FDA panel with the goal of benefitting others impacted by this terrible disease in the future.
Later that month, I joined a 100 people from 20 states on Capitol Hill for our annual Advocacy Day. This involved surgeons, nurses, researchers, patients, family members, industry leaders and those being the voice for loved ones lost. We came together not just to educate legislators about brain aneurysms, but also to ask them to work with us to increase funding for brain aneurysm research through Ellie’s Law — H.R 1648 and S. 1999. This bill seeks $25 million over five years for the National Institute of Neurological Disorders and Stroke (NINDS) to support brain aneurysm research. Ellie gave her name to the bill after she passed away due to the rupture of a brain aneurysm at the age of 14 on her second day of high school.
The other advocacy focus is to work with the Congressional appropriation committees on various report language. The final 2018 Omnibus legislation included BAF-promoted language regarding the current level of federal support on brain aneurysm research — supported by both the House and Senate!
Here is the House language:
Brain Aneurysm Research—The Committee is concerned that an estimated one out of every 50 individuals in the U.S. has a brain aneurysm and an estimated 30,000 Americans suffer a brain aneurysm rupture each year, with little to no warning. Ruptured brain aneurysms are fatal in about 40 percent of cases. The Committee requests a report from NINDS regarding its annual funding level for brain aneurysm research funding over the past five years, including the types of grants supported.
For 2019, we asked both houses of Congress to support our efforts to improve early detection and diagnosis of brain aneurysms through the inclusion of appropriations committee report language to accompany the FY 2019 Labor, Health and Human Services, Education, and Related Agencies (LHHS) appropriations bill. The language directs the Secretary of Health and Human Services, in consultation with appropriate stakeholders, to:
- Facilitate the development of best practices for brain aneurysm detection and diagnosis for first responders, emergency room physicians, primary care physicians, nurses, and advanced practice providers; and
- Develop a strategy for disseminating information about the best practices and begin implementing this strategy no later than one year after the date of enactment.
This report language for 2019 seemed to be well-received by a majority of the legislators and aides with whom we met. This positive reception is due, in large part, by our repeated visits to the Hill over the years with well-organized teams of people impacted by the disease joined by scientists to explain the disease and funding shortfalls.
Neurosurgeons have long been our allies in our efforts to prevent, treat and better understand brain aneurysms and the devastating impact on patients. Please keep in touch with the Brain Aneurysm Foundation to follow these and other initiatives, because together our voices are louder, clearer and will be heard.
Editor’s note: May is National Stroke Awareness Month. We encourage everyone to join the conversation online by using the hashtag #strokemonth.