S. 1609 — Ellie’s Law

This section states congressional findings concerning brain aneurysms, including that an estimated 6.8 million people in the U.S., or 1 in 50, have an unruptured aneurysm; approximately 30,000 suffer a rupture annually, which is fatal in 50% of cases and leaves 66% of survivors with permanent neurological deficits; ruptures are more likely in women and nearly twice as likely in African American and Hispanic individuals; such ruptures impose annual pre-insurance direct costs of approximately $2 billion with a median patient payment of $144,000; and federal research spending equates to approximately $2.94 per affected person. The section also recounts personal stories of five individuals who died from ruptured aneurysms and notes the contributions of the first three iterations of the International Study on Unruptured Intracranial Aneurysms (ISUIA) to treatment knowledge.

This section authorizes appropriations of $10 million for each of fiscal years 2026 through 2030 to the National Institute of Neurological Disorders and Stroke for comprehensive research on unruptured intracranial aneurysms in a broader patient population diversified by age, sex, and race, with funds remaining available through September 30, 2033. Such funds shall supplement, not supplant, other funding available for brain aneurysm research.