2019 Advocacy Day Material v2 2019 Advocacy Day Material v5 | Page 3

Ellie’s Law (H.R. 594/S. __) Brain aneurysms are one of the most underfunded disease research projects in the U.S. in terms of the number of Americans affected and the tremendous loss of life, diminution of quality of life for survivors, and the long-term medical costs for families affected. “Ellie’s Law” is a bipartisan bill introduced by Reps. Yvette Clarke (D-NY) and Peter King (R-NY) (H.R. 594) and Sen. Richard Blumenthal (D-CT) (S. ___) and was drafted in consultation with members of the brain aneurysm medical and research communities. Ellie’s Law would provide the first ongoing dedicated research funding stream for breakthroughs in preventing potentially fatal brain aneurysms from rupturing and improving the long-term medical consequences and quality of life issues for aneurysm survivors. Now is the time to address this critical issue by adequately funding brain aneurysm research. Brain Aneurysms Impact Millions of Americans Every Day An estimated 6 million people in the United States, or 1 in 50 people, have an unruptured brain aneurysm. Each year, an estimated 30,000 people in the United States suffer a brain aneurysm rupture, 40 percent of which are fatal. Of those who survive, about 66 percent suffer some permanent neurological deficit. The combined lost wages of survivors of brain aneurysm ruptures and their caretakers are approximately $150 million per year. Brain Aneurysms Disproportionately Affect Women and People of Color Brain aneurysms are more likely to occur in women than in men (by a 3 to 2 ratio) and more likely to rupture in African-Americans (2.1 to 1 ratio) and Hispanics (1.67 to 1 ratio) than Caucasians. Federal Funding for Brain Aneurysm Research is Disproportionately Low Despite the widespread prevalence of this condition and the high societal cost it imposes on the nation, the federal government only spends approximately $0.83 per year on brain aneurysm research for each person afflicted with a brain aneurysm. Ellie’s Law Provides Critical Funding for Brain Aneurysm Research Increased funding for brain aneurysm research is the key to finding effective treatments, interventions, and ways to prevent aneurysms from developing. Ellie’s Law would authorize an additional $5 million each fiscal year, for five years, for the National Institute of Neurological Disorders and Stroke (NINDS) to conduct or support further comprehensive research on unruptured intracranial aneurysms, studying a broader patient population diversified by age, sex, and race. Ellie’s Law honors four women who passed away as a result of a brain aneurysm: 14-year-old Ellie Helton; WABC Eyewitness News reporter Lisa Colagrossi; Teresa Anne Lawrence, devoted mother of three; and 27-year-old Jennifer Sedney who passed away on Christmas Day in 2013. Their loving families, like so many others, have now dedicated themselves to advocating for more research funding for brain aneurysms to prevent these tragedies from occurring. This legislation would allow NINDS to conduct critical research on what causes aneurysms, what causes aneurysms to rupture, determining the efficacy of intervention on smaller unruptured aneurysms, development of drugs or treatments, development of neuroprotection or regeneration for brain injury from ruptures, detecting unstable aneurysms using imaging, preventing aneurysm recurrence, finding a biomarker for aneurysms and family genetics, and socioeconomic research on aneurysm treatments, costs, and systems of care. This legislation will save lives, and we urge your support of Ellie’s Law and increased federal funding for brain aneurysm research. For more information or to sign on as a cosponsor of H.R. 594, please contact: Kwamme Anderson (Rep. Clarke) [email protected], Deena Tauster (Rep. King) [email protected], or Brian Steele (Sen. Blumenthal) [email protected]