Title: Ellie’s Law
Policy area: Health

Summary:
Ellie Helton, Lisa Colagrossi, Kristen Shafer Englert, Teresa Anne Lawrence, and Jennifer Sedney Focused Research Act or Ellie's Law
This bill authorizes appropriations for the National Institute of Neurological Disorders and Stroke to conduct or support research on unruptured brain aneurysms in a patient population diversified by age, sex, and race.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1553 Introduced in House (IH)]

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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 National Institute 
    of Neurological Disorders and Stroke on unruptured intracranial 
                               aneurysms.

    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 6.5 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. 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 American patients is approximately 
        $1,400,000,000, and the estimated direct cost to hospitals each 
        year is approximately $2,700,000,000. 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, childcare, 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 $2.08 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 $10,000,000 for each of fiscal years 2022 through 
2026, to remain available through September 30, 2029.
    (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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