Ellie’s Law

II 116TH CONGRESS 1ST SESSION S. 864 To provide for further comprehensive research at the National Institute of Neurological Disorders and Stroke on unruptured intracranial aneurysms. IN THE SENATE OF THE UNITED STATES MARCH 25, 2019 Mr. BLUMENTHAL introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To provide for further comprehensive research at the Na- tional Institute of Neurological Disorders and Stroke on unruptured intracranial aneurysms. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Ellie Helton, Lisa 4 Colagrossi, Teresa Anne Lawrence, and Jennifer Sedney 5 Focused Research Act’’ or ‘‘Ellie’s Law’’. 6 SEC. 2. FINDINGS. 7 Congress makes the following findings: 8 VerDate Sep 11 2014 05:26 Mar 30, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S864.IS S864 kjohnson on DSK79L0C42 with BILLS 2 •S 864 IS (1) An estimated 6,000,000 people in the 1 United States, or 1 in 50 people, have an 2 unruptured brain aneurysm. 3 (2) Each year, an estimated 30,000 people in 4 the United States suffer a brain aneurysm rupture. 5 Ruptured brain aneurysms are fatal in about 40 per- 6 cent of cases. Of those who survive, about 66 per- 7 cent suffer some permanent neurological deficit. 8 (3) Brain aneurysms are more likely to occur in 9 women than in men by a 3 to 2 ratio. People who 10 experienced a brain aneurysm rupture include the 11 following: 12 (A) Ellie Helton. On July 16, 2014, Ellie 13 Helton, a vibrant, loving 14-year-old from Apex, 14 North Carolina, passed away as a result of a 15 ruptured aneurysm, stunning her parents, 2 sis- 16 ters, and many, many loved ones. A day earlier, 17 on her second day of high school, she woke up 18 with a terrible headache after a plum-sized an- 19 eurysm on her brain stem ruptured. While she 20 suffered headaches throughout her life, she was 21 never diagnosed. Ellie was an avid reader and 22 excellent student, loved the arts, and was in- 23 credibly creative. She had an unwavering, con- 24 stant love for the family and friends in her life. 25 VerDate Sep 11 2014 05:26 Mar 30, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S864.IS S864 kjohnson on DSK79L0C42 with BILLS 3 •S 864 IS (B) Lisa Colagrossi. On March 20, 2015, 1 Lisa Colagrossi—WABC Eyewitness News re- 2 porter, wife of 17 years, and mother of 2 3 sons—unexpectedly passed away at the age of 4 49 years after suffering a massive ruptured 5 brain aneurysm. Despite experiencing one of 6 the classic warning signs of a brain aneurysm 7 (the ‘‘worst headache of my life’’), Lisa’s pass- 8 ing came as a tremendous shock to her family 9 and friends, who did not know what a brain an- 10 eurysm was, let alone its signs and symptoms. 11 She is remembered for being a loving wife, a 12 mother, and a successful reporter, and for her 13 love of the New York Rangers. 14 (C) Teresa Anne Lawrence, devoted moth- 15 er of 3, beloved wife, and staple of her commu- 16 nity, collapsed while visiting her son’s school on 17 December 8, 1983. She had been struggling 18 with and taking medication for hypertension for 19 several years. At age 34, after being uncon- 20 scious for 4 days, she passed away as a result 21 of a brain aneurysm. Her loving husband and 22 extended family were left to raise their children, 23 whom Teresa cherished so much. 24 VerDate Sep 11 2014 05:26 Mar 30, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S864.IS S864 kjohnson on DSK79L0C42 with BILLS 4 •S 864 IS (D) Jennifer Sedney. On December 25, 1 2013, Jennifer Sedney, a beautiful, accom- 2 plished young woman, passed away suddenly at 3 the age of 27 from a ruptured brain aneurysm. 4 Her only symptom was the ‘‘worst headache of 5 her life’’, which none of her friends or family 6 realized was a symptom of a potentially fatal 7 condition. Jenny was a jogger, a disciplined ex- 8 erciser, and a successful health care consultant 9 and had recently launched a health blog found- 10 ed on 3 principles—‘‘bee curious, bee radiant, 11 bee well’’. Her brother, mother, father, and a 12 large devoted network of friends and relatives 13 remember her every day. 14 (4) The combined lost wages of survivors of 15 brain aneurysm ruptures and their caretakers are 16 approximately $138,000,000 per year. 17 (5) Despite the widespread prevalence of this 18 condition and the high societal cost it imposes on the 19 Nation, the Federal Government spends only ap- 20 proximately $0.83 per year on brain aneurysm re- 21 search for each person afflicted with a brain aneu- 22 rysm. 23 (6) The first 3 iterations of the International 24 Study on Unruptured Intracranial Aneurysms 25 VerDate Sep 11 2014 05:26 Mar 30, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S864.IS S864 kjohnson on DSK79L0C42 with BILLS 5 •S 864 IS (ISUIA) have advanced researchers’ and clinicians’ 1 understanding of how to most effectively manage 2 and treat unruptured intracranial aneurysms. 3 SEC. 3. FUNDING. 4 (a) AUTHORIZATION OF APPROPRIATIONS.—To con- 5 duct or support further comprehensive research on 6 unruptured intracranial aneurysms, studying a broader 7 patient population diversified by age, sex, and race, there 8 is authorized to be appropriated to the National Institute 9 of Neurological Disorders and Stroke $5,000,000 for each 10 of fiscal years 2020 through 2024, to remain available 11 through September 30, 2027. 12 (b) SUPPLEMENT, NOT SUPPLANT.—Any funds 13 made available pursuant to this section shall supplement, 14 not supplant, other funding made available for research 15 on brain aneurysms. 16 Æ VerDate Sep 11 2014 05:26 Mar 30, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6301 E:\BILLS\S864.IS S864 kjohnson on DSK79L0C42 with BILLS