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 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 902 Introduced in House (IH)]
<DOC>
118th CONGRESS
1st Session
H. R. 902
To provide for further comprehensive research at the National Institute
of Neurological Disorders and Stroke on unruptured intracranial
aneurysms.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 9, 2023
Ms. Clarke of New York (for herself, Mr. Fitzpatrick, Ms. Scanlon, Mr.
Rutherford, Mr. Tonko, Mr. Lynch, Mr. Carter of Louisiana, Mr. Trone,
Ms. DelBene, Mr. Pocan, Mr. Casten, Ms. Kuster, Ms. Dean of
Pennsylvania, Ms. Blunt Rochester, and Ms. Norton) 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 6.6 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 2024 through
2028, to remain available through September 30, 2031.
(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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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