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Senate and House of Representatives Proposed Legislation[S. 3000 Christopher Reeve Paralysis Act; H.R. 5458 Christopher Reeve Paralysis Act] S. 3000. 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; to the Committee on Health, Education, Labor and Pensions. Mr. HARKIN: Mr. President, I am pleased to be joined by Senators Brownback, Kennedy, and Specter today in introducing legislation that will provide hope to Americans living with paralysis. Recent news reports about the medical miracle Christopher Reeve has experienced this past year are an inspiration for every American living with paralysis as a result of a spinal cord injury. When it was announced that, for the firs time since his accident in 1995, Chris was able to wiggle his fingers and toes, there was hope for some of the two million Americans living with paralysis. Today, through the Christopher Reeve Paralysis Act of 2002, we seek to achieve two primary goals. First to further advance the science needed to help those living with paralysis take their next step. And second, to time build quality of life programs throughout the country that will further advance full participation, independent living, self- sufficiency and equality of opportunity for individuals with paralysis and other physical disabilities. Chris' recovery and recent scientific evidence show that there is hope for those living with paralysis. At research centers in the United States, Europe and Japan, new techniques of rigorous exercise have helped an estimated 500 persons with paraplegic with limited sensations in their lower bodies walk for short distances, unassisted or using walkers. While the results of these new methods are quite miraculous, the limits of what physical exercise can do for patients remains grossly understudied. While each person and each injury in unique, and some people recover spontaneously, an estimated 200,000 Americans are living with spinal cord injuries that have not improved. Which therapy or combination of therapies will work for each person is unknown. Today 2 million Americans are living with paralysis, including spinal cord injury, stroke, cerebral palsy, multiple sclerosis, ALS and spina bifida. We need research to see how these new interventions work on the entire population on individuals living with paralysis. What we do know is the ordinary repetitive motions used in most rehabilitation centers, like squeezing a ball, are almost certainly not enough to appropriately address neurological injuries. Patients are usually told that after one year, two at the most, they will never make further progress in their abilities to move or feel sensation. Yet seven years after his accident, through a rigorous exercise plan, Chris Reeve is finally seeking results. Due to efforts led by the National Institutes of Health and the Christopher Reeve Paralysis Foundation, our nation stands on the brink of amazing breakthroughs in science for those living with paralysis. However, the biotech and pharmaceutical industries have not invested in paralysis research because they believe the market does not support the private investment. There is an urgent need for the federal government to further step up its commitment in this area. The Christopher Reeve Paralysis Act would do just that. By establishing Paralysis Research Consortia at the National Institute on Neurological Disorders and Stoke, we can substantially increase our ability to capitalize on research advances in paralysis. These consortia would be formed to explore unique scientific expertise and focus across the existing research centers at NINDS in an effort to further advance treatments, therapies and developments on one or more forms of paralysis that result from central nervous system trauma and stroke. Additional breakthrough are under way in rehabilitation research on paralysis. Federal funding for rehabilitation research at the National Center for Medical Rehabilitation Research at NIH is showing real potential to improve functional mobility; prevent secondary complications like bladder and urinary tract infections and ulcers; and to develop improved assistive technology. These rehabilitation interventions have the potential to greatly reduce pain and suffering for those suffering from neurological disorders and stroke and, at the same time, save millions in health care expenditures. Over the past 20 years, overall days in the hospital and rehabilitation centers for those living with paralysis have been cut in half. Those living with paralysis face astronomical medical costs, and our best estimates tell us that only one-third of those individuals remain employed after paralysis. At least one-third of those living with paralysis have income of $15,000 or less. To date, there are no State-based programs at CDC that address paralysis and other physical disability with the goal of improving health outcomes and prevent secondary complications. This bill will, for the first time, ensure that individuals living with paralysis get the information they need; have access to public health programs; and support in their communities to navigate services. Ultimately these programs will help remove the barriers to community participation and help improve quality of life. The bill also establishes hospital-based registries on paralysis to collect needed data on the true numbers of individuals with these conditions, and it invests in population-based research to see how individuals are faring. We are on the brink of major breakthroughs for individuals impacted by neurological disorders and stroke that result in paralysis. This bill will ensure that the federal government does it part to help more than 2 million Americans. When Christopher Reeve was injured, he put a face on an issue that has been neglected for too long. Since then, his tireless efforts to walk again, coupled with his passion and commitment to improve quality of life for others living with paralysis, make him a role model for everyone. It is a pleasure, and an honor to lead a bipartisan group of Senators, along with the support of number of disability groups, including the American Stroke Association, the American Heart Association, the Christopher Reeve Paralysis Foundation, the National Family Caregivers Association, the National Spinal Cord Injury Association, Paralyzed Veterans of America and Eastern Paralyzed Veterans, in introducing this bill.
107th CONGRESS
2d Session
S. 3000
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
September 24, 2002
Mr. Harkin (for himself, Mr. Brownback, Mr. Kennedy, and Mr. Specter)
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 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 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 2003 through 2006.
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 January 10, 2004, 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 2003 through 2006.
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 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 and
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 a Comprehensive Paralysis and Other
Physical Disability Quality of Life Program to develop State-
based, unique and innovative programs, services and
demonstrations 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) prevention of secondary complications;
(D) home and community-based interventions;
(E) education and awareness programs for health
care providers; and
(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 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 living with
paralysis and other physical disabilities and their caregivers;
and
(4) testing model intervention programs to improve health
and quality of life.
(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 October 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 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 rehabilitation 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 Prevention;
(3) the Health Resources and Services Administration;
(4) the Agency for Healthcare Research and Quality;
(5) the Centers for Medicare & Medicaid Services;
(6) the Department of Veterans Affairs;
(7) the Department of Education;
(8) the Rehabilitation Services Administration;
(9) the National Aeronautics and Space Administration;
(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 annually prepare and
submit to the Secretary a report concerning the status of successful
and emerging opportunities 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.
TRIBUTE TO CHRISTOPHER REEVE
Mr. HOYER: Mr. Speaker, on the eve of Christopher Reeve's 50th birthday, I would like to recognize his unfailing courage, strength, and faith as he has worked to overcome paralysis. Not only has Christopher Reeve put a human face on spinal cord injury, but he has become a leading advocate for medical research, better care for people with spinal cord injury and for increased quality of life for the more than two million Americans living with paralysis.______ HON. STENY H. HOYER of maryland in the house of representatives Tuesday, September 24, 2002 After graduating from Cornell University in 1974 and studying at Julliard, Christopher Reeve made his broadway debut opposite Katherine Hepburn in A Matter of Gravity. Best known for his star role in Superman and its many sequels, Christopher Reeve has dazzled the big screen and stage in numerous productions, such as The Bostonians, Street Smart, Speechless, Noises Off, Above Suspicion, The Remains of the Day, and most recently, Rear Window. He made his directorial debut with “In the Gloaming” in 1997, which received five Emmy nominations and published his autobiography, Still Me in 1998, which spent eleven weeks on the New York Times Bestseller List. But beyond his experience within the entertainment arena, Christopher Reeve has achieved great success in a new and much more challenging role: a survivor of spinal cord injury who is working toward a medical miracle. Christopher Reeve has become a beacon of hope for all people with spinal cord injury and paralysis. The recent news reports about his medical progress has been an inspiration for not only those living with paralysis, but also for the medical research community. For the first time since his accident in 1995, Christopher Reeve is able to wiggle his fingers and toes, experience sensation in his body, and tell the difference between hot and cold—something that the medical community did not believe was possible in someone so far removed from the initial time of his accident. Christopher Reeve's recovery and recent scientific evidence show that there is hope for those living with paralysis. At research centers in the United States, Europe and Japan, new techniques of rigorous exercise has helped an estimated 500 persons with paraplegia and limited sensations in their lower bodies to walk for short distances, either unassisted or using walkers. While the results of these new methods are quite miraculous, the limits of what physical exercise can do for patients remains grossly understudied. While each person and each injury is unique, and some people recover spontaneously, an estimated 200,000 Americans are living with spinal cord injuries that have not improved. Which therapy or combination of therapies will work for each persons is unknown. Today 2 million Americans are living with paralysis, including spinal cord injury, stroke, cerebral palsy, multiple sclerosis, ALS and spina bifida. We need research to see how these new interventions work on the entire population of individuals living with paralysis. Tomorrow, I will join my colleagues in introducing the Christopher Reeve Paralysis Act of 2002, which seeks to further advance the science needed to help those living with paralysis take that next step and at the same time build quality of life program in the state that will further advance full participation, independent living, self- sufficiency and equality of opportunity for individuals with paralysis and other physical disabilities. Those living with paralysis face astronomical medical costs, and our best estimates tell us that only one-third of those individuals remain employed after paralysis. At least one-third of those living with paralysis have incomes of $15,000 or less. And over the past 20 years, overall days spent in the hospital and rehabilitation centers for those living with paralysis have been cut in half. Christopher Reeve's recent triumphs in overcoming paralysis prove how close we are to achieving major breakthroughs for people who have paralysis. The Christopher Reeve Paralysis Act of 2002 will ensure that the federal government does its part to help the more than two million Americans with paralysis who are still waiting for their own breakthroughs. As John F. Kennedy once said, "The stories of past courage can define that ingredient-they can teach, they can offer hope, they can provide inspiration. But they cannot supply courage itself. For this each man must look into his own soul." Since Christopher Reeve was injured, his tireless efforts to walk again, coupled with his faith, passion and commitment to improve quality of life for others living with paralysis, make him an inspiration to us all. Happy Birthday, Chris.
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 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 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 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 2003 through 2006.
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 2003 through 2006.
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 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 a Comprehensive Paralysis and Other
Physical Disability Quality of Life Program to develop State-
based, unique and innovative programs, services and
demonstrations 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) prevention of secondary complications;
(D) home and community-based interventions;
(E) education and awareness programs for health
care providers;
(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 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 living with
paralysis and other physical disabilities and their caregivers;
and
(4) testing model intervention programs to improve health
and quality of life.
(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 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 rehabilitation 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 Prevention;
(3) the Health Resources and Services Administration;
(4) the Agency for Healthcare Research and Quality;
(5) the Centers for Medicare & Medicaid Services;
(6) the Department of Veterans Affairs;
(7) the Department of Education;
(8) the Rehabilitation Services Administration;
(9) the National Aeronautics and Space Administration;
(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 annually prepare and
submit to the Secretary a report concerning the status of successful
and emerging opportunities 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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