110th CONGRESS
1st Session
H. R. 446
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
January 12, 2007
Mr. BILIRAKIS 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 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 and Dana Reeve Quality of Life
for Persons with Paralysis Act'.
SEC. 2. TABLE OF CONTENTS.
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.
(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.
(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, 2007, 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 in the aggregate $25,000,000
for the fiscal years 2008 through 2011. 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.
(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, 2007, 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 2008 through 2011. 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--
(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, 2007, 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 in the aggregate $25,000,000
for the fiscal years 2008 through 2011.
TITLE IV--ACTIVITIES OF THE DEPARTMENT OF VETERANS AFFAIRS
SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES OF THE VETERANS HEALTH
ADMINISTRATION.
(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 Chief Research and Development Officer of the 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-
(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 award 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 Department of Veterans
Affairs; and
(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 and--
(i) 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
(ii) may include administrative, research, clinical, educational and
implementation cores, other cores 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 Administration medical
centers 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 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 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 Administration 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 2008 through 2011. 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.
END
