I
107TH CONGRESS
2D SESSION
H. R. 5458
To enhance and further research into paralysis and to improve rehabilitation
and the quality of life for persons living with paralysis and other physical
disabilities, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
SEPTEMBER 25, 2002
Mr. BILIRAKIS (for himself, Mr. BROWN of Ohio, Mr. YOUNG of Florida, Mr.
LANGEVIN, Mr. HOUGHTON, and Mr. HOYER) introduced the following
bill; which was referred to the Committee on Energy and Commerce
A BILL
To enhance and further research into paralysis and to im-
prove rehabilitation and the quality of life for persons
living with paralysis and other physical disabilities, and
for other purposes.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Christopher Reeve Pa-
ralysis Act’’.
SEC. 2. TABLE OF CONTENTS.
Sec. 1. Short title.
Sec. 2. Table of contents.
TITLE I—PARALYSIS RESEARCH
Sec. 101. Expansion and coordination of activities of National Institutes of
Health with respect to research on paralysis.
TITLE II— PARALYSIS REHABILITATION RESEARCH AND CARE
Sec. 201. Expansion and coordination of activities of National Institutes of
Health with respect to research with implications for enhancing
daily function for persons with paralysis.
TITLE III—IMPROVING QUALITY OF LIFE FOR PERSONS WITH
PARALYSIS AND OTHER PHYSICAL DISABILITIES
Sec. 301. Programs to improve quality of life for persons with paralysis and
other physical disabilities.
TITLE IV—COORDINATION OF PARALYSIS RESEARCH AND
PROGRAMS
Sec. 401. Coordination.
TITLE I—PARALYSIS RESEARCH
SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES
OF THE NATIONAL INSTITUTES OF HEALTH
WITH RESPECT TO RESEARCH ON PARALYSIS.
(a) IN GENERAL.—
(1) ENHANCED
COORDINATION
OF
ACTIVI-
TIES.—The Director of the National Institutes of
Health (in this section referred to as the ‘‘Director’’)
may expand and coordinate the activities of such In-
stitutes with respect to research on paralysis.
(2) ADMINISTRATION OF PROGRAM; COLLABO-
RATION AMONG AGENCIES.—The Director shall carry
out this section acting through the Director of the
National Institute of Neurological Disorders and
Stroke (in this section referred to as the ‘‘Institute’’)
and in collaboration with any other agencies that the
Director determines appropriate.
(b) COORDINATION.—
(1) IN GENERAL.—The Director may develop
mechanisms to coordinate the paralysis research and
rehabilitation activities of the agencies of the Na-
tional Institutes of Health in order to further ad-
vance such activities and avoid duplication of activi-
ties.
(2) REPORT.—Not later than December 1,
2003, the Director shall prepare a report to Con-
gress that provides a description of the paralysis ac-
tivities of the Institute and strategies for future ac-
tivities.
(c) CHRISTOPHER REEVE PARALYSIS RESEARCH
CONSORTIA.—
(1) IN
GENERAL.—The Director may under
subsection (a)(1) make awards of grants to public or
nonprofit private entities to pay all or part of the
cost of planning, establishing, improving, and pro-
viding basic operating support for consortia in paral-
ysis research. The Director shall designate each con-
sortium funded under grants as a Christopher Reeve
Paralysis Research Consortium.
(2) RESEARCH.—Each consortium under para-
graph (1)—
(A) may conduct basic and clinical paral-
ysis research;
(B) may focus on advancing treatments
and developing therapies in paralysis research;
(C) may focus on one or more forms of pa-
ralysis that result from central nervous system
trauma or stroke;
(D) may facilitate and enhance the dis-
semination of clinical and scientific findings;
and
(E ) may replicate the findings of consortia
members for scientific and translational pur-
poses.
(3) COORDINATION OF CONSORTIA; REPORTS.—
The Director may, as appropriate, provide for the
coordination of information among consortia under
paragraph (1) and ensure regular communication
between members of the consortia, and may require
the periodic preparation of reports on the activities
of the consortia and the submission of the reports to
the Director.
(4) ORGANIZATION OF CONSORTIA.—Each con-
sortium under paragraph (1) may use the facilities
of a single lead institution, or be formed from sev-
eral cooperating institutions, meeting such require-
ments as may be prescribed by the Director.
(d) PUBLIC INPUT.—The Director may under sub-
section (a)(1) provide for a mechanism to educate and dis-
seminate information on the existing and planned pro-
grams and research activities of the National Institutes
of Health with respect to paralysis and through which the
Director can receive comments from the public regarding
such programs and activities.
(e) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated such sums as may be necessary for
each of the fiscal years 2003 through 2006. Amounts ap-
propriated under this subsection are in addition to any
other amounts appropriated for such purpose.
TITLE II— PARALYSIS REHABILI-
TATION RESEARCH AND CARE
SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES
OF NATIONAL INSTITUTES OF HEALTH WITH
RESPECT TO RESEARCH WITH IMPLICATIONS
FOR ENHANCING DAILY FUNCTION FOR PER-
SONS WITH PARALYSIS.
(a) IN GENERAL.—
(1) EXPANSION OF ACTIVITIES.—The Director
of the National Institutes of Health (in this section
referred to as the ‘‘Director’’) may expand and co-
ordinate the activities of such Institutes with respect
to research with implications for enhancing daily
function for people with paralysis .
(2) ADMINISTRATION OF PROGRAM; COLLABO-
RATION AMONG AGENCIES.—The Director shall carry
out this section acting through the Director of the
National Institute on Child Health and Human De-
velopment and the National Center for Medical Re-
habilitation Research and in collaboration with the
National Institute on Neurological Disorders and
Stroke, the Centers for Disease Control and Preven-
tion, and any other agencies that the Director deter-
mines appropriate.
(b) PARALYSIS CLINICAL TRIALS NETWORKS.—
(1) IN
GENERAL.—The Director may make
awards of grants to public or nonprofit private enti-
ties to pay all or part of the costs of planning, estab-
lishing, improving, and providing basic operating
support to multicenter networks of clinical sites that
will collaborate to design clinical rehabilitation inter-
vention protocols and measures of outcomes on one
or more forms of paralysis that result from central
nervous system trauma, disorders, or stroke, or any
combination of such conditions.
(2) RESEARCH.—Each multicenter clinical trial
network may—
(A) focus on areas of key scientific con-
cern, including—
(i) improving functional mobility;
(ii) promoting behavioral adaptation
to functional losses, especially to prevent
secondary complications;
(iii) assessing the efficacy and out-
comes of medical rehabilitation therapies
and practices and assistive technologies;
(iv) 
developing 
improved 
assistive
technology to improve function and inde-
pendence; and
(v) understanding whole body system
responses to physical impairments, disabil-
ities, and societal and functional limita-
tions; and
(B) replicate the findings of network mem-
bers for scientific and translation purposes.
(3) COORDINATION OF CLINICAL TRIALS NET-
WORKS.—The Director may, as appropriate, provide
for the coordination of information among networks
and ensure regular communication between members
of the networks and may require the periodic prepa-
ration of reports on the activities of the networks
and submission of reports to the Director.
(c) REPORT.—Not later than December 1, 2003, the
Director shall submit to the Congress a report that pro-
vides a description of research activities with implications
for enhancing daily function for persons with paralysis.
(d) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated such sums as may be necessary for
each of the fiscal years 2003 through 2006. Amounts ap-
propriated under this subsection are in addition to any
other amounts appropriated for such purpose.
TITLE III—IMPROVING QUALITY
OF LIFE FOR PERSONS WITH
PARALYSIS AND OTHER PHYS-
ICAL DISABILITIES
SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR
PERSONS 
WITH 
PARALYSIS 
AND 
OTHER
PHYSICAL DISABILITIES.
(a) IN GENERAL.—The Secretary of Health and
Human Services (in this Act referred to as the ‘‘Sec-
retary’’), acting through the Director of the Centers for
Disease Control and Prevention, may study the unique
health challenges associated with paralysis and other phys-
ical disabilities and carry out projects and interventions
to improve the quality of life and long-term health status
of persons with paralysis and other physical disabilities.
The Secretary may carry out such projects directly and
through awards of grants or contracts.
(b) CERTAIN
ACTIVITIES.—Activities under sub-
section (a) include—
(1) the development of a national paralysis and
physical disability quality of life action plan, to pro-
mote full participation, independent living, self-suffi-
ciency and equality of opportunity in partnership
with voluntary health agencies focused on paralysis
and other physical disabilities, to be carried out in
coordination with the State-based Comprehensive
Paralysis and Other Physical Disability Quality of
Life Program of the Centers for Disease Control and
Prevention;
(2) support for programs to disseminate infor-
mation involving care and rehabilitation options and
quality of life grant programs supportive of commu-
nity based programs and support systems for per-
sons with paralysis and other physical disabilities;
(3) in collaboration with other centers and na-
tional voluntary health agencies, establish a hospital-
based paralysis registry and conduct relevant popu-
lation-based research; and
(4) the development of a Comprehensive Paral-
ysis and Other Physical Disability Quality of Life
Program to develop State-based, unique and innova-
tive programs, services and demonstrations designed
to support and advance quality of life programs for
persons living with paralysis and other physical dis-
abilities focusing on—
(A) caregiver education;
(B) physical activity;
(C) prevention of secondary complications;
(D) home and community-based interven-
tions;
(E) education and awareness programs for
health care providers;
(F) coordinating services and removing
barriers that prevent full participation and inte-
gration into the community; and
(G) recognizing the unique needs of under-
served populations.
(c) GRANTS.—The Secretary may award grants to
nonprofit private health and disability organizations for
the purpose of—
(1) coordinating existing services with State-
based paralysis and physical disability programs;
(2) disseminating information to the public;
(3) improving access to services for persons liv-
ing with paralysis and other physical disabilities and
their caregivers; and
(4) testing model intervention programs to im-
prove health and quality of life.
(d) COORDINATION OF ACTIVITIES.—The Secretary
shall assure that activities under this section are coordi-
nated as appropriate with other agencies of the Public
Health Service.
(e) REPORT TO CONGRESS.— Not later than Decem-
ber 1, 2003, the Secretary shall submit to the Congress
a report describing the results of the evaluation under sub-
section (a), and as applicable, the strategies developed
under such subsection.
(f) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated such sums as may be necessary for
each of the fiscal years 2003 through 2006.
TITLE 
IV—COORDINATION 
OF
PARALYSIS RESEARCH AND
PROGRAMS
SEC. 401. COORDINATION.
(a) ESTABLISHMENT
OF WORKING GROUP.—The
Secretary may convene a working group for the purpose
of coordinating paralysis research, public health, and reha-
bilitation training at the Federal level.
(b) COMPOSITION.—The working group may include
representatives of—
(1) the National Institutes of Health;
(2) the Centers for Disease Control and Preven-
tion;
(3) the Health Resources and Services Adminis-
tration;
(4) the Agency for Healthcare Research and
Quality;
(5) the Centers for Medicare & Medicaid Serv-
ices;
(6) the Department of Veterans Affairs;
(7) the Department of Education;
(8) the Rehabilitation Services Administration;
(9) the National Aeronautics and Space Admin-
istration;
(10) the National Institute on Standards and
Technology (Department of Commerce);
(11) the Department of Defense;
(12) the Department of Labor;
(13) the National Institute on Disability and
Rehabilitation Research;
(14) the Social Security Administration; and
(15) private entities determined appropriate by
the Secretary.
(c) DISSEMINATION.—The working group may annu-
ally prepare and submit to the Secretary a report con-
cerning the status of successful and emerging opportuni-
ties in Federal paralysis research, education and training,
quality of life, or surveillance efforts.
(d) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated such sums as may be necessary for
each of the fiscal years 2003 through 2006.
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