Ellie’s Law

I 117TH CONGRESS 1ST SESSION H. R. 1553 To provide for further comprehensive research at the National Institute of Neurological Disorders and Stroke on unruptured intracranial aneurysms. IN THE HOUSE OF REPRESENTATIVES MARCH 3, 2021 Ms. CLARKE of New York (for herself, Mr. FITZPATRICK, Ms. SCANLON, and Mr. STIVERS) 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, Kristen Shafer Englert, Teresa Anne Law- 5 rence, and Jennifer Sedney Focused Research Act’’ or 6 ‘‘Ellie’s Law’’. 7 SEC. 2. FINDINGS. 8 The Congress makes the following findings: 9 VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS 2 •HR 1553 IH (1) An estimated 6.5 million 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 50 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. This Act rep- 10 resents all those who have been affected and died 11 due to a ruptured brain aneurysm, and their loved 12 ones. People who experienced a brain aneurysm rup- 13 ture include the following: 14 (A) Ellie Helton. On July 16, 2014, Ellie 15 Helton, a vibrant, loving 14-year-old from Apex, 16 North Carolina, passed away as a result of a 17 ruptured aneurysm, stunning her parents, two 18 sisters, and many, many loved ones. A day ear- 19 lier, on her second day of high school, she woke 20 up with a terrible headache after a plum-sized 21 aneurysm on her brain stem ruptured. While 22 she suffered headaches throughout her life, she 23 was never diagnosed. Ellie was an avid reader 24 and excellent student, loved the arts, and was 25 VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS 3 •HR 1553 IH incredibly creative. She had an unwavering, 1 constant love for the family and friends in her 2 life. 3 (B) Lisa Colagrossi. On March 20, 2015, 4 Lisa Colagrossi—WABC Eyewitness News re- 5 porter, wife of 17 years, and mother of two 6 sons—unexpectedly passed away at the age of 7 49 years after suffering a massive ruptured 8 brain aneurysm. Despite experiencing one of 9 the classic warning signs of a brain aneurysm 10 (the ‘‘worst headache of my life’’), Lisa’s pass- 11 ing came as a tremendous shock to her family 12 and friends, who did not know what a brain an- 13 eurysm was, let alone its signs and symptoms. 14 She is remembered for being a loving wife, a 15 mother, and a successful reporter, and for her 16 love of the New York Rangers. 17 (C) Kristen Shafer Englert. On November 18 24, 2013, Kristen Shafer Englert, a devoted 19 wife, mother, daughter, sister, aunt, and friend, 20 passed away from a ruptured brain aneurysm 21 at the age of 25, just weeks after giving birth 22 to her son. Prior to her passing, she went to the 23 emergency room with symptoms of a brain an- 24 eurysm and was sent home without a scan. 25 VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS 4 •HR 1553 IH Kristen was a dedicated teacher who loved chil- 1 dren. She was thrilled to become a mother. 2 Sadly, she only experienced motherhood for a 3 few short days. Kristen’s family members have 4 been dedicated advocates since her passing. 5 (D) Teresa Anne Lawrence. On December 6 8, 1983, Teresa Anne Lawrence,a devoted 7 mother of three, beloved wife, and staple of her 8 community, collapsed while visiting her son’s 9 school. She had been struggling with and taking 10 medication for hypertension for several years. 11 At age 34, after being unconscious for four 12 days, she passed away as a result of a brain an- 13 eurysm. Her loving husband and extended fam- 14 ily were left to raise their children, whom Te- 15 resa cherished so much. 16 (E) Jennifer Sedney. On December 25, 17 2013, Jennifer Sedney, a beautiful, accom- 18 plished young woman, passed away suddenly at 19 the age of 27 from a ruptured brain aneurysm. 20 Her only symptom was the ‘‘worst headache of 21 her life’’, which none of her friends or family 22 realized was a symptom of a potentially fatal 23 condition. Jenny was a jogger, a disciplined ex- 24 erciser, and a successful health care consultant 25 VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS 5 •HR 1553 IH and had recently launched a health blog found- 1 ed on three principles—‘‘bee curious, bee radi- 2 ant, bee well’’. Her brother, mother, and father, 3 and a large devoted network of friends and rel- 4 atives, remember her every day. 5 (4) Brain aneurysm ruptures have a significant 6 fiscal impact on survivors, caretakers, and the health 7 care community. The annual estimated pre-insur- 8 ance direct cost of brain aneurysm ruptures to 9 American patients is approximately $1,400,000,000, 10 and the estimated direct cost to hospitals each year 11 is approximately $2,700,000,000. The length of stay 12 in the intensive care unit is the largest driver of cost 13 for brain aneurysm ruptures, and estimates do not 14 reflect indirect costs including travel, food, childcare, 15 and wage losses for patients and caretakers. 16 (5) Despite the widespread prevalence of this 17 condition and the high societal cost it imposes on the 18 Nation, the Federal Government only spends ap- 19 proximately $2.08 per year on brain aneurysm re- 20 search for each person afflicted with a brain aneu- 21 rysm. 22 (6) The first three iterations of the Inter- 23 national Study on Unruptured Intracranial Aneu- 24 rysms (ISUIA) have advanced researchers’ and clini- 25 VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS 6 •HR 1553 IH cians’ understanding of how to most effectively man- 1 age and treat unruptured intracranial aneurysms. 2 SEC. 3. FUNDING. 3 (a) AUTHORIZATION OF APPROPRIATIONS.—To con- 4 duct or support further comprehensive research on 5 unruptured intracranial aneurysms, studying a broader 6 patient population diversified by age, sex, and race, there 7 is authorized to be appropriated to the National Institute 8 of Neurological Disorders and Stroke $10,000,000 for 9 each of fiscal years 2022 through 2026, to remain avail- 10 able through September 30, 2029. 11 (b) SUPPLEMENT, NOT SUPPLANT.—Any funds 12 made available pursuant to this section shall supplement, 13 not supplant, other funding made available for research 14 on brain aneurysms. 15 Æ VerDate Sep 11 2014 20:22 Apr 17, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6301 E:\BILLS\H1553.IH H1553 pbinns on DSKJLVW7X2PROD with BILLS