What This Bill Does
This bill allows the Secretary of Health and Human Services to run a research program about cerebral palsy. The program would study ways to diagnose and treat cerebral palsy, figure out what causes it, and teach doctors and the public about the condition.
Who It Affects
The Centers for Disease Control and Prevention (the federal agency that tracks disease) would run the program. Other federal agencies and partners would help. Doctors, health professionals, and people affected by cerebral palsy would benefit from the research and education.
Key Provisions
• The Secretary, working through the Centers for Disease Control and Prevention, must carry out a research program on cerebral palsy by doing research directly or through grants and contracts. (Sec. 3)
• The research must focus on the best ways to diagnose and treat cerebral palsy, what factors reduce how common it is, and the costs of the condition to health care and society. (Sec. 3)
• The program must include public health surveillance (watching and tracking the disease) and other research the Centers for Disease Control and Prevention decides is needed to educate health professionals and the general public. (Sec. 3)
• The Secretary may provide technical assistance to public and nonprofit private organizations doing this research. (Sec. 3)
• The Secretary must evaluate whether the research activities work well and how they affect different groups of people. (Sec. 3)
What Changes
If this bill becomes law, a new federal research program on cerebral palsy would start. The Centers for Disease Control and Prevention would begin studying cerebral palsy diagnosis, treatment, causes, and costs using money approved by Congress.
Important Definitions
None defined in bill text.
I
118TH CONGRESS
1ST SESSION H. R. 1280
To amend the Public Health Service Act to authorize the Secretary of Health
and Human Services to carry out a program of research related to
cerebral palsy, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
MARCH 1, 2023
Mr. COHEN (for himself, Mr. FITZPATRICK, and Mr. CLEAVER) introduced the
following bill; which was referred to the Committee on Energy and Commerce
A BILL
To amend the Public Health Service Act to authorize the
Secretary of Health and Human Services to carry out
a program of research related to cerebral palsy, and
for other purposes.
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 ‘‘Cerebral Palsy Re-
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search Program Authorization Act of 2023’’.
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SEC. 2. FINDINGS.
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Congress finds the following:
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•HR 1280 IH
(1) Cerebral palsy is the most common motor
1
disability in children, affecting more than 1,000,000
2
Americans, 1 in 345 children, and over 17,000,000
3
people worldwide.
4
(2) In the United States, more than 10,000 ba-
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bies are diagnosed with cerebral palsy each year.
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(3) Cerebral palsy is a broad group of disorders
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disrupting a person’s ability to move, sit, stand,
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walk, talk, and use their hands.
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(4) In more than 80 percent of cases, the cause
10
of cerebral palsy is unknown.
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(5) Seventy-five percent of individuals with cer-
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ebral palsy also have 1 or more additional develop-
13
mental disabilities including epilepsy, intellectual dis-
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abilities, communication problems, learning and at-
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tention disorders, chronic pain, autism, hearing dis-
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orders, and visual impairments or blindness.
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(6) Children with cerebral palsy are more likely
18
to die from the flu and related viruses, including
19
COVID–19, than children without neurologic dis-
20
orders.
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(7) There is no consensus of best practices for
22
a person with cerebral palsy at the time of diagnosis
23
or through the lifespan.
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•HR 1280 IH
(8) It is estimated that the lifetime care and
1
medical costs for all people with cerebral palsy who
2
were born in 2000 alone will total more than
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$13,500,000,000. The loss of productivity and lost
4
wages of the individual with cerebral palsy and their
5
family members is more than $35,000,000,000.
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(9) There is no known cure for cerebral palsy,
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and in most cases, it is not preventable.
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SEC. 3. CEREBRAL PALSY RESEARCH.
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Title III of the Public Health Service Act is amended
10
by inserting after section 317C of such Act (42 U.S.C.
11
247b–4) the following new section:
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‘‘SEC. 317C–1. CEREBRAL PALSY RESEARCH.
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‘‘(a) IN GENERAL.—The Secretary, acting through
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the Director of the Centers for Disease Control and Pre-
15
vention, and in consultation with other Federal agencies
16
and partners, shall carry out (directly or through grants
17
or contracts) a program of research related to cerebral
18
palsy, including—
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‘‘(1) research on—
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‘‘(A) the most promising avenues of cere-
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bral palsy diagnosis and treatment;
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‘‘(B) factors that may mitigate the preva-
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lence of cerebral palsy; and
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•HR 1280 IH
‘‘(C) the health care and societal costs of
1
cerebral palsy;
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‘‘(2) public health surveillance; and
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‘‘(3) other research that the Director of the
4
Centers for Disease Control and Prevention deter-
5
mines to be appropriate to provide education and
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training for health professionals and the general
7
public for purposes of diagnosing, treating, and ex-
8
plaining the causes, prevalence, and lifelong effects
9
of cerebral palsy.
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‘‘(b) TECHNICAL ASSISTANCE.—The Secretary may
11
(directly or through grants or contracts) provide technical
12
assistance to public and nonprofit private entities in fur-
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therance of research under this section.
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‘‘(c) EVALUATIONS.—The Secretary shall (directly or
15
through grants or contracts) provide for the evaluation of
16
activities under subsection (a) in order to determine the
17
extent to which such activities have been effective, includ-
18
ing evaluation of the effects of such activities on various
19
demographic populations.
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‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To
21
carry out this section, there is authorized to be appro-
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priated $5,000,000 for each of fiscal years 2024 through
23
2029.’’.
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Æ
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