The role neurosurgeons play in the lives of their patients extends beyond the operating room. Not only can this involve research endeavors to propel forward our understanding of neurosurgical diseases and their management, but it can also extend into advocacy efforts. For vascular neurosurgeons, advocacy for brain aneurysm research serves as an important example.
Brain aneurysms affect approximately one in every 50 Americans, and an estimated 30,000 Americans suffer aneurysmal subarachnoid hemorrhages annually. Up to 50 percent of patients will not survive this hemorrhage, and many survivors are left with significant disability. As a condition that can affect those in the prime of their lives, the loss of quality-adjusted life years is significant. Investigations aimed at biomarkers for aneurysm detection and prediction of patient-specific rupture risk, preventive and treatment strategies (including novel technologies) for ruptured and unruptured aneurysms, prompt diagnosis and accurate imaging, mitigation of early and delayed brain injury following subarachnoid hemorrhage, and strategies for functional, cognitive and psychosocial recovery are all areas deserving of further research. Brain aneurysm research, however, has generally been severely underfunded. Into this void have stepped patient advocacy organizations, such as the Brain Aneurysm Foundation (BAF), taking on the mantle of not only fundraising to directly support research but also to address the paucity of federal funds directed towards this serious and life-threatening disease.
Working hand–in–hand with neurosurgeons, the BAF has offered annual research awards to the most meritorious research proposals. The proposals are reviewed and graded by neurosurgical and other experts in the field, to identify the most promising applications for funding. Over the years, the BAF has been able to fund 4.7 million dollars of research related to brain aneurysms. Working closely with neurosurgeons on their Medical Advisory Board, the BAF has also worked to propose legislation to ameliorate federal underfunding of research for this disease. In this regard, Ellie’s Law was first introduced in the 114th Congress on September 27, 2016. This bipartisan bill would provide the first ongoing, dedicated research funding for brain aneurysms. Ellie’s Law honors four women who passed away due to ruptured aneurysms, and this bill was written with the input of those affected by brain aneurysms, as well as the medical and research communities. The current legislation has been brought forth in the House, and the Senate version of the bill is due to be introduced in the coming months. Support from neurosurgeons and national organizations like the American Association of Neurological Surgeons (AANS) have been critical in these efforts : https://www.aans.org/en/DC-E-News/2019/May-2019/Neurosurgery-Sends-Letters-of-Support-for-HR-594S-864-Ellies-Law
In support of its advocacy activities, the BAF organizes an annual Advocacy Day on Capitol Hill, which includes not only patients, caregivers and family members, but also nurses, surgeons and researchers. This Advocacy Day allows neurosurgeons to speak directly with members of Congress about brain aneurysms, provide their unique perspectives on aneurysm detection and treatment, and stress the importance of increased research funding. This year’s Advocacy Day will be hosted on March 23 (https://give.bafound.org/site/TR?fr_id=2360&pg=entry&_gl=1*18cbmhr*_ga*NjYzMzEwMTIyLjE2NDUxMjA5MDk.*_ga_6E2WQCJ04F*MTY3NzE3NzA5Ny4xMy4wLjE2NzcxNzcwOTcuNjAuMC4w&_ga=2.37172773.461882895.1677095257-663310122.1645120909).
Caring for our patients often requires advocacy – from the individual level to the broader population level. As neurosurgeons, we can contribute meaningfully to these efforts. Working with the BAF, we have successfully participated national efforts to raise awareness and highlight the gaps in research funding for brain aneurysms.
Laura Stone McGuire, MD (BAF Advocacy Day Volunteer); Sepideh Amin-Hanjani, MD FAANS FACS FAHA (BAF Medical Advisory Board Member); With acknowledgment to Christine Buckley (BAF Executive Director)
