Ellie’s Law

II 118TH CONGRESS 1ST SESSION S. 895 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 21, 2023 Mr. BLUMENTHAL (for himself and Mr. MULLIN) introduced the following bill; which was read twice and referred to the Committee on Health, Edu- cation, 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, 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 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS 2 •S 895 IS (1) An estimated 6,600,000 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 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. Ellie’s Law 10 represents 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, 2 sis- 18 ters, and many, many loved ones. A day earlier, 19 on her second day of high school, she woke up 20 with a terrible headache after a plum-sized an- 21 eurysm on her brain stem ruptured. While she 22 suffered headaches throughout her life, she was 23 never diagnosed. Ellie was an avid reader and 24 excellent student, loved the arts, and was in- 25 VerDate Sep 11 2014 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS 3 •S 895 IS credibly creative. She had an unwavering, con- 1 stant love for the family and friends in her 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 2 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) Kristen Shafer Englert. On November 17 24, 2013, Kristen Shafer Englert, a devoted 18 wife, mother, daughter, sister, aunt, and friend 19 passed away from a ruptured brain aneurysm 20 at the age of 25, just weeks after giving birth 21 to her son. Prior to her passing, she went to the 22 emergency room with symptoms of a brain an- 23 eurysm and was sent home without a scan. 24 Kristen was a dedicated teacher who loved chil- 25 VerDate Sep 11 2014 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS 4 •S 895 IS dren. She was thrilled to become a mother. 1 Sadly, she got to experience motherhood only 2 for a few short days. Kristen’s family members 3 have been dedicated advocates for brain aneu- 4 rysm awareness and research since her passing. 5 (D) Teresa Anne Lawrence. On December 6 8, 1983, Teresa Anne Lawrence, a devoted 7 mother of 3, 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 4 days, 12 she passed away as a result of a brain aneu- 13 rysm. Her loving husband and extended family 14 were left to raise their children, whom Teresa 15 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 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS 5 •S 895 IS and had recently launched a health blog found- 1 ed on 3 principles—‘‘bee curious, bee radiant, 2 bee well’’. Her brother, mother, father, and a 3 large devoted network of friends and relatives 4 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 pa- 9 tients in the United States is approximately 10 $1,400,000,000, and the estimated direct cost to 11 hospitals each year is approximately 12 $2,700,000,000. The intensive care unit length of 13 stay is the largest driver of cost for brain aneurysm 14 ruptures, and estimates do not reflect indirect costs, 15 which include travel, food, childcare, and wage losses 16 for patient and caretakers. 17 (5) Despite the widespread prevalence of this 18 condition and the high societal cost it imposes on the 19 Nation, the Federal Government only spends ap- 20 proximately $2.08 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 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS 6 •S 895 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 $10,000,000 for 10 each of fiscal years 2024 through 2028, to remain avail- 11 able through September 30, 2031. 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 23:56 Mar 30, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6301 E:\BILLS\S895.IS S895 kjohnson on DSK79L0C42PROD with BILLS