[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>