119-hr2678

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2678 Introduced in House

    (IH) ]

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119th CONGRESS
 1st Session
 H. R. 2678

To provide for further comprehensive research at the National Institute 
 of Neurological Disorders and Stroke on unruptured intracranial 
 aneurysms, and for other purposes.

_______________________________________________________________________

 IN THE HOUSE OF REPRESENTATIVES

 April 7, 2025

 Mr. Fitzpatrick (for himself, Ms. Clarke of New York, Mr. Rutherford, 
 and Ms. Scanlon) introduced the following bill; which was referred to 
 the Committee on Energy and Commerce

_______________________________________________________________________

 A BILL

To provide for further comprehensive research at the National Institute 
 of Neurological Disorders and Stroke on unruptured intracranial 
 aneurysms, and for other purposes.

 Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

 This Act may be cited as the ``Ellie Helton, Lisa Colagrossi, 
Kristen Shafer Englert, Teresa Anne Lawrence, and Jennifer Sedney 
Focused Research Act'' or ``Ellie's Law''.

SEC. 2. FINDINGS.

 The Congress makes the following findings:

    (1) An estimated 6.8 million people in the United States, 
 or 1 in 50 people, have an unruptured brain aneurysm.

    (2) Each year, an estimated 30,000 people in the United 
 States suffer a brain aneurysm rupture. Ruptured brain 
 aneurysms are fatal in about 50 percent of cases. Of those who 
 survive, about 66 percent suffer some permanent neurological 
 deficit.

    (3) Brain aneurysms are more likely to occur in women than 
 in men by a 3 to 2 ratio and nearly twice as likely to rupture 
 in African Americans (2.1 to 1 ratio) and Hispanics (1.67 to 1 
 ratio) than Caucasians. This Act represents all those who have 
 been affected and died due to a ruptured brain aneurysm, and 
 their loved ones. People who experienced a brain aneurysm 
 rupture include the following:
        (A) Ellie Helton. On July 16, 2014, Ellie Helton, a 
 vibrant, loving 14-year-old from Apex, North Carolina, 
 passed away as a result of a ruptured aneurysm, 
 stunning her parents, two sisters, and many, many loved 
 ones. A day earlier, on her second day of high school, 
 she woke up with a terrible headache after a plum-sized 
 aneurysm on her brain stem ruptured. While she suffered 
 headaches throughout her life, she was never diagnosed. 
 Ellie was an avid reader and excellent student, loved 
 the arts, and was incredibly creative. She had an 
 unwavering, constant love for the family and friends in 
 her life.
        (B) Lisa Colagrossi. On March 20, 2015, Lisa 
 Colagrossi--WABC Eyewitness News reporter, wife of 17 
 years, and mother of two sons--unexpectedly passed away 
 at the age of 49 years after suffering a massive 
 ruptured brain aneurysm. Despite experiencing one of 
 the classic warning signs of a brain aneurysm (the 
 ``worst headache of my life''), Lisa's passing came as 
 a tremendous shock to her family and friends, who did 
 not know what a brain aneurysm was, let alone its signs 
 and symptoms. She is remembered for being a loving 
 wife, a mother, and a successful reporter, and for her 
 love of the New York Rangers.
            (C) Kristen Shafer Englert. On November 24, 2013, 
 Kristen Shafer Englert, a devoted wife, mother, 
 daughter, sister, aunt, and friend, passed away from a 
 ruptured brain aneurysm at the age of 25, just weeks 
 after giving birth to her son. Prior to her passing, 
 she went to the emergency room with symptoms of a brain 
 aneurysm and was sent home without a scan. Kristen was 
 a dedicated teacher who loved children. She was 
 thrilled to become a mother. Sadly, she only 
 experienced motherhood for a few short days. Kristen's 
 family members have been dedicated advocates since her 
 passing.
            (D) Teresa Anne Lawrence. On December 8, 1983, 
 Teresa Anne Lawrence, a devoted mother of three, 
 beloved wife, and staple of her community, collapsed 
 while visiting her son's school. She had been 
 struggling with and taking medication for hypertension 
 for several years. At age 34, after being unconscious 
 for four days, she passed away as a result of a brain 
 aneurysm. Her loving husband and extended family were 
 left to raise their children, whom Teresa cherished so 
 much.
        (E) Jennifer Sedney. On December 25, 2013, Jennifer 
 Sedney, a beautiful, accomplished young woman, passed 
 away suddenly at the age of 27 from a ruptured brain 
 aneurysm. Her only symptom was the ``worst headache of 
 her life'', which none of her friends or family 
 realized was a symptom of a potentially fatal 
 condition. Jenny was a jogger, a disciplined exerciser, 
 and a successful health care consultant and had 
 recently launched a health blog founded on three 
 principles--``bee curious, bee radiant, bee well''. Her 
 brother, mother, and father, and a large devoted 
 network of friends and relatives, remember her every 
 day.

    (4) Brain aneurysm ruptures have a significant fiscal 
 impact on survivors, caretakers, and the health care community. 
 The annual estimated pre-insurance, direct cost of brain 
 aneurysm ruptures to patients is approximately $2,000,000,000, 
 and the median expected patient payment is $114,000. The length 
 of stay in the intensive care unit is the largest driver of 
 cost for brain aneurysm ruptures, and estimates do not reflect 
 indirect costs including travel, food, child care, and wage 
 losses for patients and caretakers.

    (5) Despite the widespread prevalence of this condition and 
 the high societal cost it imposes on the Nation, the Federal 
 Government only spends approximately $2.94 per year on brain 
 aneurysm research for each person afflicted with a brain 
 aneurysm.

    (6) The first three iterations of the International Study 
 on Unruptured Intracranial Aneurysms

    (ISUIA) have advanced 
 researchers' and clinicians' understanding of how to most 
 effectively manage and treat unruptured intracranial aneurysms.

SEC. 3. FUNDING.

    (a) Authorization of Appropriations.--To conduct or support further 
comprehensive research on unruptured intracranial aneurysms, studying a 
broader patient population diversified by age, sex, and race, there is 
authorized to be appropriated to the National Institute of Neurological 
Disorders and Stroke $20,000,000 for each of fiscal years 2026 through 
2030, to remain available through September 30, 2033.

    (b) Supplement, Not Supplant.--Any funds made available pursuant to 
this section shall supplement, not supplant, other funding made 
available for research on brain aneurysms.
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