Ellie’s Law

I 116TH CONGRESS 1ST SESSION H. R. 594 To provide for further comprehensive research at the National Institute of Neurological Disorders and Stroke on unruptured intracranial aneurysms. IN THE HOUSE OF REPRESENTATIVES JANUARY 16, 2019 Ms. CLARKE of New York (for herself and Mr. KING of New York) introduced the following bill; which was referred to the Committee on Energy and Commerce 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 The Congress makes the following findings: 8 VerDate Sep 11 2014 04:05 Jan 29, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H594.IH H594 kjohnson on DSK79L0C42 with BILLS 2 •HR 594 IH (1) An estimated 6 million people in the United 1 States, or 1 in 50 people, have an unruptured brain 2 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, two 16 sisters, and many, many loved ones. A day ear- 17 lier, on her second day of high school, she woke 18 up with a terrible headache after a plum-sized 19 aneurysm on her brain stem ruptured. While 20 she suffered headaches throughout her life, she 21 was never diagnosed. Ellie was an avid reader 22 and excellent student, loved the arts, and was 23 incredibly creative. She had an unwavering, 24 VerDate Sep 11 2014 04:05 Jan 29, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H594.IH H594 kjohnson on DSK79L0C42 with BILLS 3 •HR 594 IH constant love for the family and friends in her 1 life. 2 (B) Lisa Colagrossi. On March 20, 2015, 3 Lisa Colagrossi—WABC Eyewitness News re- 4 porter, wife of 17 years, and mother of two 5 sons—unexpectedly passed away at the age of 6 49 years after suffering a massive ruptured 7 brain aneurysm. Despite experiencing one of 8 the classic warning signs of a brain aneurysm 9 (the ‘‘worst headache of my life’’), Lisa’s pass- 10 ing came as a tremendous shock to her family 11 and friends, who did not know what a brain an- 12 eurysm was, let alone its signs and symptoms. 13 She is remembered for being a loving wife, a 14 mother, and a successful reporter, and for her 15 love of the New York Rangers. 16 (C) Teresa Anne Lawrence, devoted moth- 17 er of three, beloved wife, and staple of her com- 18 munity, collapsed while visiting her son’s school 19 on December 8, 1983. She had been struggling 20 with and taking medication for hypertension for 21 several years. At age 34, after being uncon- 22 scious for four days, she passed away as a re- 23 sult of a brain aneurysm. Her loving husband 24 VerDate Sep 11 2014 04:05 Jan 29, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H594.IH H594 kjohnson on DSK79L0C42 with BILLS 4 •HR 594 IH and extended family were left to raise their chil- 1 dren, whom Teresa cherished so much. 2 (D) Jennifer Sedney. On December 25, 3 2013, Jennifer Sedney, a beautiful, accom- 4 plished young woman, passed away suddenly at 5 the age of 27 from a ruptured brain aneurysm. 6 Her only symptom was the ‘‘worst headache of 7 her life’’, which none of her friends or family 8 realized was a symptom of a potentially fatal 9 condition. Jenny was a jogger, a disciplined ex- 10 erciser, and a successful health care consultant 11 and had recently launched a health blog found- 12 ed on three principles—‘‘bee curious, bee radi- 13 ant, bee well’’. Her brother, mother, father, and 14 a large devoted network of friends and relatives 15 remember her every day. 16 (4) The combined lost wages of survivors of 17 brain aneurysm ruptures and their caretakers are 18 approximately $138,000,000 per year. 19 (5) Despite the widespread prevalence of this 20 condition and the high societal cost it imposes on the 21 Nation, the Federal Government only spends ap- 22 proximately $0.83 per year on brain aneurysm re- 23 search for each person afflicted with a brain aneu- 24 rysm. 25 VerDate Sep 11 2014 04:05 Jan 29, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H594.IH H594 kjohnson on DSK79L0C42 with BILLS 5 •HR 594 IH (6) The first three iterations of the Inter- 1 national Study on Unruptured Intracranial Aneu- 2 rysms (ISUIA) have advanced researchers’ and clini- 3 cians’ understanding of how to most effectively man- 4 age and treat unruptured intracranial aneurysms. 5 SEC. 3. FUNDING. 6 (a) AUTHORIZATION OF APPROPRIATIONS.—To con- 7 duct or support further comprehensive research on 8 unruptured intracranial aneurysms, studying a broader 9 patient population diversified by age, sex, and race, there 10 is authorized to be appropriated to the National Institute 11 of Neurological Disorders and Stroke $5,000,000 for each 12 of fiscal years 2020 through 2024, to remain available 13 through September 30, 2027. 14 (b) SUPPLEMENT, NOT SUPPLANT.—Any funds 15 made available pursuant to this section shall supplement, 16 not supplant, other funding made available for research 17 on brain aneurysms. 18 Æ VerDate Sep 11 2014 04:05 Jan 29, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6301 E:\BILLS\H594.IH H594 kjohnson on DSK79L0C42 with BILLS