I 
109TH CONGRESS 
1ST SESSION H. R. 1554
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 
APRIL 12, 2005
Mr. BILIRAKIS (for himself, Mr. BROWN of Ohio, Mrs. BONO, Mr. CASE, Mr. 
FOSSELLA, Mr. FRANK of Massachusetts, Mr. HINCHEY, Mr. LANGEVIN, 
Ms. LEE, Ms. SCHAKOWSKY, Mr. SMITH of Washington, Mr. TOWNS, and 
Mr. WAXMAN) introduced the following bill; which was referred to the 
Committee on Energy and Commerce, and in addition to the Committee 
on Veterans’ Affairs, for a period to be subsequently determined by the 
Speaker, in each case for consideration of such provisions as fall within 
the jurisdiction of the committee concerned 
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 the 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 the 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—ACTIVITIES OF THE DEPARTMENT OF VETERANS 
AFFAIRS 
Sec. 401. Expansion and coordination of activities of the Veterans Health Ad-
ministration. 
Sec. 402. Definitions.
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. In 
order to further expand upon the activities of this 
section, the Director may consider the methods out-
lined in the report under section 2(b) of Public Law
108–427 with respect to spinal cord injury and pa-
ralysis research (relating to the Roadmap for Med-
ical Research of the National Institutes of Health). 
(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, 
2005, 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 in the aggregate $25,000,000 for the 
fiscal years 2006 through 2009. Amounts appropriated 
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 THE NATIONAL INSTITUTES OF HEALTH 
WITH RESPECT TO RESEARCH WITH IMPLICA-
TIONS FOR ENHANCING DAILY FUNCTION 
FOR PERSONS 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 assisting 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; REPORTS.—The Director may, as appro-
priate, provide for the coordination of information 
among networks and ensure regular communication 
between members of the networks, and may require 
the periodic preparation of reports on the activities 
of the networks and submission of reports to the Di-
rector. 
(c) REPORT.—Not later than December 1, 2005, 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 in the aggregate $25,000,000 for the 
fiscal years 2006 through 2009. Amounts appropriated 
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 title 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 health and wellness in order to enhance full 
participation, independent living, self-sufficiency and 
equality of opportunity in partnership with voluntary 
health agencies focused on paralysis and other phys-
ical 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 comprehensive, unique 
and innovative programs, services, and demonstra-
tions within existing State-based disability and 
health programs of the Centers for Disease Control 
and Prevention which are designed to support and 
advance quality of life programs for persons living 
with paralysis and other physical disabilities focus-
ing on—
(A) caregiver education; 
(B) physical activity; 
(C) education and awareness programs for 
health care providers;
(D) prevention of secondary complications; 
(E) home and community-based interven-
tions; 
(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 in ac-
cordance with the following: 
(1) To State and local health and disability 
agencies for the purpose of—
(A) establishing paralysis registries for the 
support of relevant population-based research; 
(B) developing comprehensive paralysis 
and other physical disability action plans and 
activities focused on the items listed in sub-
section (b)(4); 
(C) assisting State-based programs in es-
tablishing and implementing partnerships and 
collaborations that maximize the input and sup-
port of people with paralysis and other physical 
disabilities and their constituent organizations;
(D) coordinating paralysis and physical 
disability activities with existing state-based dis-
ability and health programs; 
(E) providing education and training op-
portunities and programs for health profes-
sionals and allied caregivers; and 
(F) developing, testing, evaluating, and 
replicating effective intervention programs to 
maintain or improve health and quality of life. 
(2) To nonprofit private health and disability 
organizations for the purpose of—
(A) disseminating information to the pub-
lic; 
(B) improving access to services for per-
sons living with paralysis and other physical 
disabilities and their caregivers; 
(C) testing model intervention programs to 
improve health and quality of life; and 
(D) coordinating existing services with 
state-based disability and health programs. 
(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, 2005, 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 in the aggregate $25,000,000 for the 
fiscal years 2006 through 2009. 
TITLE IV—ACTIVITIES OF THE 
DEPARTMENT OF VETERANS 
AFFAIRS 
SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES 
OF THE VETERANS HEALTH ADMINISTRA-
TION. 
(a) IN GENERAL.—
(1) ENHANCED
COORDINATION
OF
ACTIVI-
TIES.—The Secretary of Veterans Affairs may ex-
pand and coordinate activities of the Veterans 
Health Administration of the Department of Vet-
erans Affairs with respect to research on paralysis. 
(2) ADMINISTRATION OF PROGRAM.—The Sec-
retary shall carry out this section through the Chief 
Research and Development Officer of the Adminis-
tration and in collaboration with the National Insti-
tutes of Health and other agencies the Secretary de-
termines appropriate. 
(b) ESTABLISHMENT
OF
PARALYSIS
RESEARCH, 
EDUCATION, AND CLINICAL CARE.—
(1) IN GENERAL.—The Secretary may establish 
within the Department of Veterans Affairs centers 
to be known as Paralysis Research, Education and 
Clinical Care Centers. Such centers shall be estab-
lished through the award of grants to Administra-
tion medical centers that are affiliated with medical 
schools or other organizations the Secretary con-
siders appropriate. Such grants may be used to pay 
all or part of the costs of planning, establishing, im-
proving, and providing basic operating support for 
such centers. 
(2) RESEARCH.—Each center under paragraph 
(1)—
(A) may focus on basic biomedical research 
on the types of paralysis that result from 
neurologic dysfunction, neurodegeneration, or 
trauma; 
(B) may focus on clinical science research 
on the types of paralysis that result from 
neurologic dysfunction, neurodegeneration, or 
trauma;
(C) may focus on rehabilitation research 
on the types of paralysis that result from 
neurologic dysfunction, neurodegeneration, or 
trauma; 
(D) may focus on health services research 
on the types of paralysis that result from 
neurologic dysfunction, neurodegeneration, or 
trauma to improve health outcomes, increase 
the cost-effectiveness of service, and implement 
best practices in the treatment of such types of 
paralysis; and 
(E) may facilitate and enhance the dis-
semination of scientific findings and evidence-
based practices. 
(3) COORDINATION
OF
CENTERS
INTO
CON-
SORTIA.—The Secretary may, as appropriate, pro-
vide for the linkage and coordination of information 
among centers under paragraph (1) in order to cre-
ate national consortia of centers and to ensure reg-
ular communications between members of the cen-
ters. Each consortium—-
(A) may expand the capacity of its Admin-
istration medical centers to conduct basic, clin-
ical, rehabilitation, and health-sciences research
with respect to paralysis by increasing the avail-
able research resources; 
(B) may identify gaps in research, clinical 
service, or implementation strategies; 
(C) may operate as a multidisciplinary re-
search and clinical care team to determine best 
practices, to develop standards of care, and to 
establish guidelines for implementation through-
out the Department of Veterans Affairs; and 
(D) may use the facilities of a single lead 
institution, or facilities formed from several co-
operating institutions, that meet such require-
ments as prescribed by the Secretary and—
(i) may provide core funding that will 
enhance ongoing research by bringing to-
gether paralysis health care and research 
communities in a manner that will enrich 
the effectiveness of clinical care, present 
research and future directions; and 
(ii) may include administrative, re-
search, clinical, educational and implemen-
tation cores, other cores may be proposed. 
(4) COORDINATION
OF
INFORMATION; 
RE-
PORTS.—The Secretary may, as appropriate, provide 
for the coordination of information among centers
and consortia under this section and ensure regular 
communication with respect to the activities of the 
centers and consortia, and may require the periodic 
preparation of reports on the activities of the centers 
and consortia, and require the submission of such 
reports. 
(c) ESTABLISHMENT
OF QUALITY ENHANCEMENT 
RESEARCH INITIATIVES FOR PARALYSIS.—
(1) IN
GENERAL.—The Secretary may make 
grants to Administration medical centers for the 
purpose of carrying out projects to translate clinical 
findings and recommendations with respect to paral-
ysis into evidence-based best practices for use by the 
Administration. Such projects shall be designated by 
the Secretary as Quality Enhancement Research Ini-
tiative projects (referred to in this subsection as 
‘‘QUERI projects’’). 
(2) REQUIREMENT.—A grant may be made 
under paragraph (1) to an Administration medical 
center only if the center is affiliated with a school 
of medicine or with another entity determined by the 
Secretary to be appropriate. 
(3) CERTAIN USES OF GRANT.—The activities 
for which a grant under paragraph (1) may be ex-
pended by a QUERI project include the following:
(A) To pay all or part of the costs of plan-
ning, establishing, improving and providing 
basic operating support for the project. 
(B) To work toward implementing best 
practices 
identified 
under 
paragraph 
(1) 
throughout the Administration through efforts 
to 
facilitate 
comprehensive 
organizational 
change, and to evaluate and refine such imple-
mentation efforts through the collection, anal-
ysis, and reporting of data on critical patient 
outcomes and system performance. 
(C) To identify high-risk or high-volume 
primary or secondary consequences of paralysis 
that 
results 
from 
neurologic 
dysfunction, 
neurodegeneration, or trauma. 
(D) To systematically examine quality of 
care for persons with paralysis from neurologic 
dysfunction, neurodegeneration, or trauma. 
(E) To define existing practice patterns 
and outcomes for persons with paralysis 
throughout the Administration and current var-
iation from best practices both within and out-
side of the Department of Veterans Affairs. 
(F) To enhance ongoing research by bring-
ing together paralysis clinical care and health
service research communities to identify the 
health care needs of the paralysis community, 
examine standard practices, determine best 
practices and to implement best practices for 
persons with paralysis and their families. 
(G) To formulate health service research 
protocols aimed at determining paralysis-care 
related best practices, closing the gap between 
current practices in paralysis care in the De-
partment of Veterans Affairs, assessing the best 
practices within and outside of the Department 
of Veterans Affairs, and developing strategies 
for the implementation of best practices. 
(H) To implement information, tools, prod-
ucts and other interventions determined to be in 
the best interest of persons with paralysis (in-
cluding performance criteria for clinicians and 
psychosocial interventions for veterans and their 
families). 
(I) To disseminate findings in scientific 
peer-reviewed journals and other venues deemed 
appropriate, such as veteran service organiza-
tion publications. 
(4) 
ORGANIZATION
OF
PROJECT.—Each 
QUERI project may use the facilities of a single
lead Administration medical center, or be formed 
from cooperating such centers that meet such re-
quirements as may be prescribed by the Secretary. 
(5) MAINTENANCE OF EFFORT.—A grant may 
be made under paragraph (1) only if, with respect 
to activities for which the award is authorized to be 
expended, the applicant for the award agrees to 
maintain expenditures of non-Federal amounts for 
such activities at a level that is not less than the 
level of such expenditures maintained by the appli-
cant for the fiscal year preceding the first fiscal year 
for which the applicant receives such an award. 
(d) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there are authorized 
to be appropriated in the aggregate $25,000,000 for fiscal 
years 2006 through 2009. Amounts appropriated under 
this section are in addition to any other amounts appro-
priated for such purpose. 
SEC. 402. DEFINITIONS. 
For purposes of this title: 
(1) The term ‘‘Administration’’ means the Vet-
erans Health Administration of the Department of 
Veterans Affairs.
(2) The term ‘‘Secretary’’ means the Secretary 
of Veterans Affairs.
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