Christopher Reeve Paralysis Act - Amends the Public Health Service Act to permit the Director of the National Institutes of Health (NIH): (1) acting through the Director of the National Institute of Neurological Disorders and Stroke, to expand and coordinate NIH activities on paralysis research; (2) to award grants to plan, establish, improve, and provide basic operating support for Christopher Reeve Paralysis Research Consortia; (3) to educate and disseminate information and receive public comment on NIH programs and research regarding paralysis; (4) acting through the Director of the National Institute on Child Health and Human Development and the National Center for Rehabilitation Research, to expand and coordinate NIH research with implications for enhancing daily function for persons with paralysis; and (5) to make grants to plan, establish, improve, and provide basic operating support for multicenter clinical trial networks to design clinical rehabilitation intervention protocols and measures of outcomes on paralysis.
Permits the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to study the health challenges associated with paralysis and other physical disabilities and carry out projects and interventions to improve the quality of life and long-term health status of individuals with such conditions.
Permits the Secretary to award grants for activities related to paralysis, including to: (1) establish paralysis registries; and (2) disseminate information to the public.
Allows the Secretary of Veterans Affairs to: (1) establish Paralysis Research, Education and Clinical Care Centers; and (2) award grants to medical centers of the Department of Veterans Affairs (VA) to translate clinical findings and recommendations on paralysis into evidence-based best practices.
[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[S. 828 Introduced in Senate (IS)]
109th CONGRESS
1st Session
S. 828
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 SENATE OF THE UNITED STATES
April 18, 2005
Mr. Harkin (for himself, Mr. Specter, Mr. Kennedy, Mr. Graham, Mrs.
Clinton, Mr. Bingaman, and Mr. Kerry) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
A BILL
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.
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 ``Christopher Reeve Paralysis Act''.
SEC. 2. TABLE OF CONTENTS.
The table of contents of this Act is as follows:
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 Administration.
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 activities.--The Director of
the National Institutes of Health (in this section referred to
as the ``Director'') may expand and coordinate the activities
of such Institutes with respect to research on paralysis. In
order to further expand upon the activities of this section,
the Director may consider the methods outlined in the report
under section 2(b) of Public Law 108-427 with respect to spinal
cord injury and paralysis research (relating to the Roadmap for
Medical Research of the National Institutes of Health).
(2) Administration of program; collaboration 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 National Institutes of Health in order
to further advance such activities and avoid duplication of
activities.
(2) Report.--Not later than December 1, 2005, the Director
shall prepare and submit a report to Congress that provides a
description of the paralysis activities of the Institute and
strategies for future activities.
(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 providing basic operating support for consortia
in paralysis research. The Director shall designate each
consortium funded under grants as a Christopher Reeve Paralysis
Research Consortium.
(2) Research.--Each consortium under paragraph (1)--
(A) may conduct basic and clinical paralysis
research;
(B) may focus on advancing treatments and
developing therapies in paralysis research;
(C) may focus on one or more forms of paralysis
that result from central nervous system trauma or
stroke;
(D) may facilitate and enhance the dissemination of
clinical and scientific findings; and
(E) may replicate the findings of consortia members
for scientific and translational purposes.
(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 consortium under
paragraph (1) may use the facilities of a single lead
institution, or be formed from several cooperating
institutions, meeting such requirements as may be prescribed by
the Director.
(d) Public Input.--The Director may under subsection (a)(1) provide
for a mechanism to educate and disseminate information on the existing
and planned programs 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 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.
(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 coordinate the activities of such
Institutes with respect to research with implications for
enhancing daily function for people with paralysis.
(2) Administration of program; collaboration among
agencies.--The Director shall carry out this section acting
through the Director of the National Institute on Child Health
and Human Development and the National Center for Medical
Rehabilitation Research and in collaboration with the National
Institute on Neurological Disorders and Stroke, the Centers for
Disease Control and Prevention, and any other agencies that the
Director determines appropriate.
(b) Paralysis Clinical Trials Networks.--
(1) In general.--The Director may make awards of grants to
public or nonprofit private entities to pay all or part of the
costs of planning, establishing, improving, and providing basic
operating support to multicenter networks of clinical sites
that will collaborate to design clinical rehabilitation
intervention 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 concern,
including--
(i) improving functional mobility;
(ii) promoting behavioral adaptation to
functional losses, especially to prevent
secondary complications;
(iii) assessing the efficacy and outcomes
of medical rehabilitation therapies and
practices and assisting technologies;
(iv) developing improved assistive
technology to improve function and
independence; and
(v) understanding whole body system
responses to physical impairments,
disabilities, and societal and functional
limitations; and
(B) replicate the findings of network members for
scientific and translation purposes.
(3) Coordination of clinical trials networks; reports.--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
preparation of reports on the activities of the networks and
submission of reports to the Director.
(c) Report.--Not later than December 1, 2005, the Director shall
submit to the Congress a report that provides 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 PHYSICAL 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 ``Secretary''), acting through the
Director of the Centers for Disease Control and Prevention, may study
the unique health challenges associated with paralysis and other
physical 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 subsection (a) include--
(1) the development of a national paralysis and physical
disability quality of life action plan, to promote 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 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 information
involving care and rehabilitation options and quality of life
grant programs supportive of community based programs and
support systems for persons with paralysis and other physical
disabilities;
(3) in collaboration with other centers and national
voluntary health agencies, establish a hospital-based paralysis
registry and conduct relevant population-based research; and
(4) the development of comprehensive, unique and innovative
programs, services, and demonstrations 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 focusing 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 interventions;
(F) coordinating services and removing barriers
that prevent full participation and integration into
the community; and
(G) recognizing the unique needs of underserved
populations.
(c) Grants.--The Secretary may award grants in accordance 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 subsection (b)(4);
(C) assisting State-based programs in establishing
and implementing partnerships and collaborations that
maximize the input and support of people with paralysis
and other physical disabilities and their constituent
organizations;
(D) coordinating paralysis and physical disability
activities with existing State-based disability and
health programs;
(E) providing education and training opportunities
and programs for health professionals 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 public;
(B) improving access to services for persons 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 coordinated as appropriate with other
agencies of the Public Health Service.
(e) Report to Congress.--Not later than December 1, 2005, the
Secretary shall submit to Congress a report describing the results of
the evaluation under subsection (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 ADMINISTRATION.
(a) In General.--
(1) Enhanced coordination of activities.--The Secretary may
expand and coordinate activities of the Veterans Health
Administration of the Department of Veterans Affairs with
respect to research on paralysis.
(2) Administration of program.--The Secretary shall carry
out this section through the Chief Research and Development
Officer of the Administration in collaboration with the
National Institutes of Health and other agencies the Secretary
determines 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 established through the awarding of grants to
Administration medical centers that are affiliated with medical
schools or other organizations the Secretary considers
appropriate. Such grants may be used to pay all or part of the
costs of planning, establishing, improving, 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 dissemination of
scientific findings and evidence-based practices.
(3) Coordination of centers into consortia.--The Secretary
may, as appropriate, provide for the linkage and coordination
of information among centers under paragraph (1) in order to
create national consortia of centers and to ensure regular
communications between members of the centers. Each
consortium--
(A) may expand the capacity of its Administration
medical centers to conduct basic, clinical,
rehabilitation, and health-sciences research with
respect to paralysis by increasing the available
research resources;
(B) may identify gaps in research, clinical
service, or implementation strategies;
(C) may operate as a multidisciplinary research and
clinical care team to determine best practices, to
develop standards of care, and to establish guidelines
for implementation throughout the Administration;
(D) may use the facilities of a single lead
institution, or facilities formed from several
cooperating institutions, that meet such requirements
as prescribed by the Secretary;
(E) may provide core funding that will enhance
ongoing research by bringing together paralysis health
care and research communities in a manner that will
enrich the effectiveness of clinical care, present
research and future directions; and
(F) may include administrative, research, clinical,
educational and implementation cores, and other cores
that may be proposed.
(4) Coordination of information; reports.--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 medical
centers of the Administration for the purpose of carrying out
projects to translate clinical findings and recommendations
with respect to paralysis into evidence-based best practices
for use by the Administration. Such projects shall be
designated by the Secretary as Quality Enhancement Research
Initiative projects (referred to in this subsection as ``QUERI
projects'').
(2) Requirement.--A grant may be made under paragraph (1)
to a medical center described in such paragraph 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 expended by a QUERI project
include the following:
(A) To pay all or part of the costs of planning,
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 implementation efforts through the
collection, analysis, 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 variation from best
practices both within and outside of the Department of
Veterans Affairs.
(F) To enhance ongoing research by bringing
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 Department 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, products and
other interventions determined to be in the best
interest of persons with paralysis (including
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 organization publications.
(4) Organization of project.--Each QUERI project may use
the facilities of a single lead medical center, or be formed
from cooperating such centers that meet such requirements 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 applicant 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
appropriated for such purpose.
SEC. 402. DEFINITIONS.
For purposes of this title:
(1) The term ``Administration'' means the Veterans Health
Administration of the Department of Veterans Affairs.
(2) The term ``Secretary'' means the Secretary of Veterans
Affairs.
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Introduced in Senate
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
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