[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5458 Introduced in House (IH)]







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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