[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 1183 Reported in Senate (RS)]






                                                       Calendar No. 326
110th CONGRESS
  1st Session
                                S. 1183

     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

                             April 23, 2007

   Mr. Harkin (for himself, Mr. Cochran, Mr. Kennedy, Mr. Burr, Mrs. 
Clinton, Mr. Coleman, Mr. Bingaman, Mr. Smith, Mrs. Boxer, Mr. Durbin, 
 Mr. Inouye, Mr. Leahy, Mr. Levin, Ms. Mikulski, Mr. Reed, Mr. Brown, 
Mr. Graham, Mr. Whitehouse, Mrs. Murray, Mr. Johnson, Mr. Schumer, Mr. 
   Menendez, Mr. Lautenberg, Mr. Kerry, Mr. Specter, Mr. Casey, Mrs. 
    Feinstein, Mr. Dodd, Mr. Sanders, and Mr. Obama) introduced the 
 following bill; which was read twice and referred to the Committee on 
                 Health, Education, Labor, and Pensions

                             August 3, 2007

               Reported by Mr. Kennedy, with an amendment
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]

_______________________________________________________________________

                                 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,

<DELETED>SECTION 1. SHORT TITLE.</DELETED>

<DELETED>    This Act may be cited as the ``Christopher and Dana Reeve 
Paralysis Act''.</DELETED>

<DELETED>SEC. 2. TABLE OF CONTENTS.</DELETED>

<DELETED>Sec. 1. Short title.
<DELETED>Sec. 2. Table of contents.
                  <DELETED>TITLE I--PARALYSIS RESEARCH

<DELETED>Sec. 101. Expansion and coordination of activities of the 
                            National Institutes of Health with respect 
                            to research on paralysis.
     <DELETED>TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE

<DELETED>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.
    <DELETED>TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH 
               PARALYSIS AND OTHER PHYSICAL DISABILITIES

<DELETED>Sec. 301. Programs to improve quality of life for persons with 
                            paralysis and other physical disabilities.

             <DELETED>TITLE I--PARALYSIS RESEARCH</DELETED>

<DELETED>SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES OF THE 
              NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON 
              PARALYSIS.</DELETED>

<DELETED>    (a) In General.--</DELETED>
        <DELETED>    (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).</DELETED>
        <DELETED>    (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.</DELETED>
<DELETED>    (b) Coordination.--</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (2) Report.--Not later than December 1, 2008, the 
        Director shall prepare a report to Congress that provides a 
        description of the paralysis activities of the Institute and 
        strategies for future activities.</DELETED>
<DELETED>    (c) Christopher and Dana Reeve Paralysis Research 
Consortia.--</DELETED>
        <DELETED>    (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 
        and Dana Reeve Paralysis Research Consortium.</DELETED>
        <DELETED>    (2) Research.--Each consortium under paragraph 
        (1)--</DELETED>
                <DELETED>    (A) may conduct basic and clinical 
                paralysis research;</DELETED>
                <DELETED>    (B) may focus on advancing treatments and 
                developing therapies in paralysis research;</DELETED>
                <DELETED>    (C) may focus on one or more forms of 
                paralysis that result from central nervous system 
                trauma or stroke;</DELETED>
                <DELETED>    (D) may facilitate and enhance the 
                dissemination of clinical and scientific findings; 
                and</DELETED>
                <DELETED>    (E) may replicate the findings of 
                consortia members for scientific and translational 
                purposes.</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (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.</DELETED>
<DELETED>    (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.</DELETED>
<DELETED>    (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 the fiscal years 2008 through 2011. 
Amounts appropriated under this subsection are in addition to any other 
amounts appropriated for such purpose.</DELETED>

<DELETED>TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE</DELETED>

<DELETED>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.</DELETED>

<DELETED>    (a) In General.--</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (2) Administration of program; collaboration among 
        agencies.--The Director shall carry out this section acting 
        through the Director of the National Institute of Child Health 
        and Human Development and the National Center for Medical 
        Rehabilitation Research and in collaboration with the National 
        Institute of Neurological Disorders and Stroke, the Centers for 
        Disease Control and Prevention, and any other agencies that the 
        Director determines appropriate.</DELETED>
<DELETED>    (b) Paralysis Clinical Trials Networks.--</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (2) Research.--Each multicenter clinical trial 
        network may--</DELETED>
                <DELETED>    (A) focus on areas of key scientific 
                concern, including--</DELETED>
                        <DELETED>    (i) improving functional 
                        mobility;</DELETED>
                        <DELETED>    (ii) promoting behavioral 
                        adaptation to functional losses, especially to 
                        prevent secondary complications;</DELETED>
                        <DELETED>    (iii) assessing the efficacy and 
                        outcomes of medical rehabilitation therapies 
                        and practices and assisting 
                        technologies;</DELETED>
                        <DELETED>    (iv) developing improved assistive 
                        technology to improve function and 
                        independence; and</DELETED>
                        <DELETED>    (v) understanding whole body 
                        system responses to physical impairments, 
                        disabilities, and societal and functional 
                        limitations; and</DELETED>
                <DELETED>    (B) replicate the findings of network 
                members for scientific and translation 
                purposes.</DELETED>
        <DELETED>    (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.</DELETED>
<DELETED>    (c) Report.--Not later than December 1, 2008, 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.</DELETED>
<DELETED>    (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 the fiscal years 2008 through 2011. 
Amounts appropriated under this subsection are in addition to any other 
amounts appropriated for such purpose.</DELETED>

    <DELETED>TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH 
          PARALYSIS AND OTHER PHYSICAL DISABILITIES</DELETED>

<DELETED>SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR PERSONS WITH 
              PARALYSIS AND OTHER PHYSICAL DISABILITIES.</DELETED>

<DELETED>    (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.</DELETED>
<DELETED>    (b) Certain Activities.--Activities under subsection (a) 
may include--</DELETED>
        <DELETED>    (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;</DELETED>
        <DELETED>    (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;</DELETED>
        <DELETED>    (3) in collaboration with other centers and 
        national voluntary health agencies, establish a hospital-based 
        paralysis registry and conduct relevant population-based 
        research; and</DELETED>
        <DELETED>    (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--</DELETED>
                <DELETED>    (A) caregiver education;</DELETED>
                <DELETED>    (B) physical activity;</DELETED>
                <DELETED>    (C) education and awareness programs for 
                health care providers;</DELETED>
                <DELETED>    (D) prevention of secondary 
                complications;</DELETED>
                <DELETED>    (E) home and community-based 
                interventions;</DELETED>
                <DELETED>    (F) coordinating services and removing 
                barriers that prevent full participation and 
                integration into the community; and</DELETED>
                <DELETED>    (G) recognizing the unique needs of 
                underserved populations.</DELETED>
<DELETED>    (c) Grants.--The Secretary may award grants in accordance 
with the following:</DELETED>
        <DELETED>    (1) To State and local health and disability 
        agencies for the purpose of--</DELETED>
                <DELETED>    (A) establishing paralysis registries for 
                the support of relevant population-based 
                research;</DELETED>
                <DELETED>    (B) developing comprehensive paralysis and 
                other physical disability action plans and activities 
                focused on the items listed in subsection 
                (b)(4);</DELETED>
                <DELETED>    (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;</DELETED>
                <DELETED>    (D) coordinating paralysis and physical 
                disability activities with existing State-based 
                disability and health programs;</DELETED>
                <DELETED>    (E) providing education and training 
                opportunities and programs for health professionals and 
                allied caregivers; and</DELETED>
                <DELETED>    (F) developing, testing, evaluating, and 
                replicating effective intervention programs to maintain 
                or improve health and quality of life.</DELETED>
        <DELETED>    (2) To nonprofit private health and disability 
        organizations for the purpose of--</DELETED>
                <DELETED>    (A) disseminating information to the 
                public;</DELETED>
                <DELETED>    (B) improving access to services for 
                persons living with paralysis and other physical 
                disabilities and their caregivers;</DELETED>
                <DELETED>    (C) testing model intervention programs to 
                improve health and quality of life; and</DELETED>
                <DELETED>    (D) coordinating existing services with 
                State-based disability and health programs.</DELETED>
<DELETED>    (d) Coordination of Activities.--The Secretary shall 
ensure that activities under this section are coordinated as 
appropriate with other agencies of the Public Health Service.</DELETED>
<DELETED>    (e) Report to Congress.--Not later than December 1, 2008, 
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.</DELETED>
<DELETED>    (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 the fiscal years 2008 through 
2011.</DELETED>

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Christopher and Dana 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 I--PARALYSIS RESEARCH

SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES OF THE NATIONAL 
              INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON 
              PARALYSIS.

    (a) Coordination.--The Director of the National Institutes of 
Health (referred to in this Act as the ``Director''), pursuant to the 
general authority of the Director, may develop mechanisms to coordinate 
the paralysis research and rehabilitation activities of the Institutes 
and Centers of the National Institutes of Health in order to further 
advance such activities and avoid duplication of activities.
    (b) Christopher and Dana Reeve Paralysis Research Consortia.--
            (1) In general.--The Director may under subsection (a) make 
        awards of grants to public or 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 and Dana Reeve Paralysis Research 
        Consortium.
            (2) Research.--Each consortium under paragraph (1)--
                    (A) may conduct basic, translational 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 
                or other researchers 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.
    (c) Public Input.--The Director may 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.

          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.

    (a) In General.--The Director, pursuant to the general authority of 
the Director, may make awards of grants to public or 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.
    (b) Research.--Each multicenter clinical trial network may--
            (1) focus on areas of key scientific concern, including--
                    (A) improving functional mobility;
                    (B) promoting behavioral adaptation to functional 
                losses, especially to prevent secondary complications;
                    (C) assessing the efficacy and outcomes of medical 
                rehabilitation therapies and practices and assisting 
                technologies;
                    (D) developing improved assistive technology to 
                improve function and independence; and
                    (E) understanding whole body system responses to 
                physical impairments, disabilities, and societal and 
                functional limitations; and
            (2) replicate the findings of network members for 
        scientific and translation purposes.
    (c) 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.

  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'') 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) may 
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 Disability and Health 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 population-based 
        database that may be used for longitudinal and other research 
        on paralysis and other disabling conditions; and
            (4) the replication and translation of best practices and 
        the sharing of information across States, as well as 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) promoting proper nutrition, increasing physical 
                activity, and reducing tobacco use;
                    (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 a population-based database that 
                may be used for longitudinal and other research on 
                paralysis and other disabling conditions;
                    (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 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 ensure that 
activities under this section are coordinated as appropriate with other 
agencies of the Department of Health and Human Services.
    (e) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $25,000,000 
for each of fiscal years 2008 through 2011.
                                                       Calendar No. 326

110th CONGRESS

  1st Session

                                S. 1183

_______________________________________________________________________

                                 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.

_______________________________________________________________________

                             August 3, 2007

                       Reported with an amendment