Allows the Director, acting through the Director of the National Institute on Child Health and Human Development and the National Center for Rehabilitation Research and in collaboration with other agencies, to expand and coordinate the activities of NIH with respect to research with implications for enhancing daily function for persons with paralysis. Permits the Director to make grants to multicenter networks of clinical sites that will collaborate on rehabilitation intervention protocols.
Permits the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention, to study the unique health challenges associated with paralysis and other physical disabilities to improve the quality of life and long-term health status of individuals with such conditions. Allows the Secretary to undertake direct research and to make grants. Provides for the formation of a national paralysis and physical disability quality of life plan and a hospital-based paralysis registry.
Permits the Secretary to award grants to: (1) State and local health and disability agencies, including for the purpose of establishing paralysis registries; and (2) nonprofit private health and disability organizations, including for the purpose of disseminating information to the public.
Allows the Secretary of Veterans Affairs to: (1) establish within the Department of Veterans Affairs centers for paralysis research, education, and clinical activities; and (2) carry out initiatives, through the award of grants, for quality enhancement of research on paralysis.
[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 1010 Introduced in Senate (IS)]
108th CONGRESS
1st Session
S. 1010
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
May 7, 2003
Mr. Harkin (for himself, Mr. Specter, and Mr. Kennedy) 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.
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.
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.
(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, 2003, the Director
shall prepare 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 such sums as
may be necessary for each of the fiscal years 2004 through 2007.
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 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 assistive 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.--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, 2003, 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 such sums as
may be necessary for each of the fiscal years 2004 through 2007.
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 Act 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, 2003, the
Secretary shall submit to the 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 such sums as
may be necessary for each of the fiscal years 2004 through 2007.
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 of
Veterans Affairs 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 Director of the Office of Research
and Development of the Veterans Health Administration and in
collaboration with the National Institutes of Health and other
agencies the Secretary determines appropriate.
(b) Establishment of Paralysis Research, Education, and Clinical
Care Center.--
(1) In general.--The Secretary may establish within the
Department of Veterans Affairs centers for paralysis research,
education and clinical activities. Such centers shall be
established at Department medical centers through the award of
grants to Department 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
cost 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
paralysis;
(B) may focus on rehabilitation research on
paralysis;
(C) may focus on health services and clinical
trials for 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 centers for
scientific and translational purposes.
(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 ensure regular
communications between members of the centers. Each such
consortium--
(A) may conduct large-scale clinical trials for
greater statistical significance;
(B) may operate in an interdisciplinary
rehabilitation team;
(C) may focus on determining current standards of
care and best practices; and
(D) may identify research gaps for specific
populations and identify future research needs.
(4) Organization of consortia.--Each consortium under
paragraph (3) may use the facilities of a single lead
institution, or be formed from several cooperating
institutions, meeting such requirement as prescribed by the
Secretary.
(5) Reports.--The Secretary may require the periodic
preparation of reports on the activities of the centers and
consortia and submission of such reports to the Secretary.
(c) Establishment of Quality Enhancement Research Initiatives for
Paralysis.--
(1) In general.--The Secretary may carry out initiatives
for quality enhancement of research on paralysis to translate
clinical findings and recommendations into practices within the
Veterans Health Administration. The Secretary shall carry out
those initiatives through the award of grants to Department of Veterans
Affairs medical centers that are affiliated with medical schools or
other partners the Secretary considers appropriate. Such grants may be
used to pay all or part of the cost of planning, establishing,
improving and providing basic operating support for the initiatives.
(2) Activities.--Each medical center for which funds are
provided under paragraph (1)--
(A) may identify high-risk/high volume diseases or
problems;
(B) may formulate evidence-based clinical research;
(C) may define existing practice patterns and
outcomes across the Veterans Health Administration and
current variation from best practices;
(D) may identify and implement interventions
(including performance criteria) to promote best
practices;
(E) may document that best practices improve
outcomes;
(F) may document that improved patient outcomes are
associated with improved health-related quality of
life;
(G) may develop, test, and refine, and facilitate
active distribution of, tools and products designed to
promote clinical quality improvements;
(H) may plan and prepare to launch at least one
project to implement and evaluate a quality enhancement
intervention program for the translation of clinical
research findings into routine clinical practice within
the Administration; and
(I) may compete for other Veterans Health
Administration and non-Veterans Health Administration
research projects to leverage core support.
(d) Maintenance of Effort.--The Secretary may make an award under
this section 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 entity receives such an award.
(e) Public Input.--The Secretary may under subsections (a)(1) and
(c)(1) provide for a mechanism--
(1) to educate the public on, and disseminate information
to the public on, the existing and planned programs and
research activities of the Veterans Health Administration with
respect to paralysis; and
(2) through which the Secretary can receive comments from
the public regarding those programs and activities.
(f) Authorization of Appropriations.--For the purposes of carrying
out this section, there are authorized to be appropriated such sums as
may be necessary for each of fiscal years 2004 through 2007. Amounts
appropriated under this section are in addition to any other amounts
appropriated for such purpose.
<all>
Introduced in Senate
Sponsor introductory remarks on measure. (CR S5861-5862)
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
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