```

[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1554 Introduced in House (IH)]

109th CONGRESS
  1st Session
                                H. R. 1554

     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

                             April 12, 2005

Mr. Bilirakis (for himself, Mr. Brown of Ohio, Mrs. Bono, Mr. Case, Mr. 
 Fossella, Mr. Frank of Massachusetts, Mr. Hinchey, Mr. Langevin, Ms. 
   Lee, Ms. Schakowsky, Mr. Smith of Washington, Mr. Towns, and Mr. 
   Waxman) introduced the following bill; which was referred to the 
 Committee on Energy and Commerce, and in addition to the Committee on 
 Veterans' Affairs, for a period to be subsequently determined by the 
  Speaker, in each case for consideration of such provisions as fall 
           within the jurisdiction of the committee concerned

_______________________________________________________________________

                                 A BILL

 
     To enhance and further research into paralysis and to improve 
    rehabilitation and the quality of life for persons living with 
   paralysis and other physical disabilities, and for other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Christopher 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.
Sec. 402. Definitions.

                      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. In 
        order to further expand upon the activities of this section, 
        the Director may consider the methods outlined in the report 
        under section 2(b) of Public Law 108-427 with respect to spinal 
        cord injury and paralysis research (relating to the Roadmap for 
        Medical Research of the National Institutes of Health).
            (2) Administration of program; collaboration among 
        agencies.--The Director shall carry out this section acting 
        through the Director of the National Institute of Neurological 
        Disorders and Stroke (in this section referred to as the 
        ``Institute'') and in collaboration with any other agencies 
        that the Director determines appropriate.
    (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, 2005, the Director 
        shall prepare a report to Congress that provides a description 
        of the paralysis activities of the Institute and strategies for 
        future activities.
    (c) Christopher Reeve Paralysis Research Consortia.--
            (1) In general.--The Director may under subsection (a)(1) 
        make awards of grants to public or nonprofit private entities 
        to pay all or part of the cost of planning, establishing, 
        improving, and providing basic operating support for consortia 
        in paralysis research. The Director shall designate each 
        consortium funded under grants as a Christopher Reeve Paralysis 
        Research Consortium.
            (2) Research.--Each consortium under paragraph (1)--
                    (A) may conduct basic and clinical paralysis 
                research;
                    (B) may focus on advancing treatments and 
                developing therapies in paralysis research;
                    (C) may focus on one or more forms of paralysis 
                that result from central nervous system trauma or 
                stroke;
                    (D) may facilitate and enhance the dissemination of 
                clinical and scientific findings; and
                    (E) may replicate the findings of consortia members 
                for scientific and translational purposes.
            (3) Coordination of consortia; reports.--The Director may, 
        as appropriate, provide for the coordination of information 
        among consortia under paragraph (1) and ensure regular 
        communication between members of the consortia, and may require 
        the periodic preparation of reports on the activities of the 
        consortia and the submission of the reports to the Director.
            (4) Organization of consortia.--Each consortium under 
        paragraph (1) may use the facilities of a single lead 
        institution, or be formed from several cooperating 
        institutions, meeting such requirements as may be prescribed by 
        the Director.
    (d) Public Input.--The Director may under subsection (a)(1) provide 
for a mechanism to educate and disseminate information on the existing 
and planned programs and research activities of the National Institutes 
of Health with respect to paralysis and through which the Director can 
receive comments from the public regarding such programs and 
activities.
    (e) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated in the 
aggregate $25,000,000 for the fiscal years 2006 through 2009. Amounts 
appropriated under this subsection are in addition to any other amounts 
appropriated for such purpose.

          TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE

SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES OF THE NATIONAL 
              INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH WITH 
              IMPLICATIONS FOR ENHANCING DAILY FUNCTION FOR PERSONS 
              WITH PARALYSIS.

    (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 assisting technologies;
                            (iv) developing improved assistive 
                        technology to improve function and 
                        independence; and
                            (v) understanding whole body system 
                        responses to physical impairments, 
                        disabilities, and societal and functional 
                        limitations; and
                    (B) replicate the findings of network members for 
                scientific and translation purposes.
            (3) Coordination of clinical trials networks; reports.--The 
        Director may, as appropriate, provide for the coordination of 
        information among networks and ensure regular communication 
        between members of the networks, and may require the periodic 
        preparation of reports on the activities of the networks and 
        submission of reports to the Director.
    (c) Report.--Not later than December 1, 2005, the Director shall 
submit to the Congress a report that provides a description of research 
activities with implications for enhancing daily function for persons 
with paralysis.
    (d) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated in the 
aggregate $25,000,000 for the fiscal years 2006 through 2009. Amounts 
appropriated under this subsection are in addition to any other amounts 
appropriated for such purpose.

  TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND 
                      OTHER PHYSICAL DISABILITIES

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

    (a) In General.--The Secretary of Health and Human Services (in 
this title referred to as the ``Secretary''), acting through the 
Director of the Centers for Disease Control and Prevention, may study 
the unique health challenges associated with paralysis and other 
physical disabilities and carry out projects and interventions to 
improve the quality of life and long-term health status of persons with 
paralysis and other physical disabilities. The Secretary may carry out 
such projects directly and through awards of grants or contracts.
    (b) Certain Activities.--Activities under subsection (a) include--
            (1) the development of a national paralysis and physical 
        disability quality of life action plan, to promote health and 
        wellness in order to enhance full participation, independent 
        living, self-sufficiency and equality of opportunity in 
        partnership with voluntary health agencies focused on paralysis 
        and other physical disabilities, to be carried out in 
        coordination with the State-based Comprehensive Paralysis and 
        Other Physical Disability Quality of Life Program of the 
        Centers for Disease Control and Prevention;
            (2) support for programs to disseminate information 
        involving care and rehabilitation options and quality of life 
        grant programs supportive of community based programs and 
        support systems for persons with paralysis and other physical 
        disabilities;
            (3) in collaboration with other centers and national 
        voluntary health agencies, establish a hospital-based paralysis 
        registry and conduct relevant population-based research; and
            (4) the development of comprehensive, unique and innovative 
        programs, services, and demonstrations within existing State-
        based disability and health programs of the Centers for Disease 
        Control and Prevention which are designed to support and 
        advance quality of life programs for persons living with 
        paralysis and other physical disabilities focusing on--
                    (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, 2005, the 
Secretary shall submit to the Congress a report describing the results 
of the evaluation under subsection (a), and as applicable, the 
strategies developed under such subsection.
    (f) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated in the 
aggregate $25,000,000 for the fiscal years 2006 through 2009.

       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 Chief Research and Development 
        Officer of the Administration and in collaboration with the 
        National Institutes of Health and other agencies the Secretary 
        determines appropriate.
    (b) Establishment of Paralysis Research, Education, and Clinical 
Care.--
            (1) In general.--The Secretary may establish within the 
        Department of Veterans Affairs centers to be known as Paralysis 
        Research, Education and Clinical Care Centers. Such centers 
        shall be established through the award of grants to 
        Administration medical centers that are affiliated with medical 
        schools or other organizations the Secretary considers 
        appropriate. Such grants may be used to pay all or part of the 
        costs of planning, establishing, improving, and providing basic 
        operating support for such centers.
            (2) Research.--Each center under paragraph (1)--
                    (A) may focus on basic biomedical research on the 
                types of paralysis that result from neurologic 
                dysfunction, neurodegeneration, or trauma;
                    (B) may focus on clinical science research on the 
                types of paralysis that result from neurologic 
                dysfunction, neurodegeneration, or trauma;
                    (C) may focus on rehabilitation research on the 
                types of paralysis that result from neurologic 
                dysfunction, neurodegeneration, or trauma;
                    (D) may focus on health services research on the 
                types of paralysis that result from neurologic 
                dysfunction, neurodegeneration, or trauma to improve 
                health outcomes, increase the cost-effectiveness of 
                service, and implement best practices in the treatment 
                of such types of paralysis; and
                    (E) may facilitate and enhance the dissemination of 
                scientific findings and evidence-based practices.
            (3) Coordination of centers into consortia.--The Secretary 
        may, as appropriate, provide for the linkage and coordination 
        of information among centers under paragraph (1) in order to 
        create national consortia of centers and to ensure regular 
        communications between members of the centers. Each 
        consortium---
                    (A) may expand the capacity of its Administration 
                medical centers to conduct basic, clinical, 
                rehabilitation, and health-sciences research with 
                respect to paralysis by increasing the available 
                research resources;
                    (B) may identify gaps in research, clinical 
                service, or implementation strategies;
                    (C) may operate as a multidisciplinary research and 
                clinical care team to determine best practices, to 
                develop standards of care, and to establish guidelines 
                for implementation throughout the Department of 
                Veterans Affairs; and
                    (D) may use the facilities of a single lead 
                institution, or facilities formed from several 
                cooperating institutions, that meet such requirements 
                as prescribed by the Secretary and--
                            (i) may provide core funding that will 
                        enhance ongoing research by bringing together 
                        paralysis health care and research communities 
                        in a manner that will enrich the effectiveness 
                        of clinical care, present research and future 
                        directions; and
                            (ii) may include administrative, research, 
                        clinical, educational and implementation cores, 
                        other cores may be proposed.
            (4) Coordination of information; reports.--The Secretary 
        may, as appropriate, provide for the coordination of 
        information among centers and consortia under this section and 
        ensure regular communication with respect to the activities of 
        the centers and consortia, and may require the periodic 
        preparation of reports on the activities of the centers and 
        consortia, and require the submission of such reports.
    (c) Establishment of Quality Enhancement Research Initiatives for 
Paralysis.--
            (1) In general.--The Secretary may make grants to 
        Administration medical centers for the purpose of carrying out 
        projects to translate clinical findings and recommendations 
        with respect to paralysis into evidence-based best practices 
        for use by the Administration. Such projects shall be 
        designated by the Secretary as Quality Enhancement Research 
        Initiative projects (referred to in this subsection as ``QUERI 
        projects'').
            (2) Requirement.--A grant may be made under paragraph (1) 
        to an Administration medical center only if the center is 
        affiliated with a school of medicine or with another entity 
        determined by the Secretary to be appropriate.
            (3) Certain uses of grant.--The activities for which a 
        grant under paragraph (1) may be expended by a QUERI project 
        include the following:
                    (A) To pay all or part of the costs of planning, 
                establishing, improving and providing basic operating 
                support for the project.
                    (B) To work toward implementing best practices 
                identified under paragraph (1) throughout the 
                Administration through efforts to facilitate 
                comprehensive organizational change, and to evaluate 
                and refine such implementation efforts through the 
                collection, analysis, and reporting of data on critical 
                patient outcomes and system performance.
                    (C) To identify high-risk or high-volume primary or 
                secondary consequences of paralysis that results from 
                neurologic dysfunction, neurodegeneration, or trauma.
                    (D) To systematically examine quality of care for 
                persons with paralysis from neurologic dysfunction, 
                neurodegeneration, or trauma.
                    (E) To define existing practice patterns and 
                outcomes for persons with paralysis throughout the 
                Administration and current variation from best 
                practices both within and outside of the Department of 
                Veterans Affairs.
                    (F) To enhance ongoing research by bringing 
                together paralysis clinical care and health service 
                research communities to identify the health care needs 
                of the paralysis community, examine standard practices, 
                determine best practices and to implement best 
                practices for persons with paralysis and their 
                families.
                    (G) To formulate health service research protocols 
                aimed at determining paralysis-care related best 
                practices, closing the gap between current practices in 
                paralysis care in the Department of Veterans Affairs, 
                assessing the best practices within and outside of the 
                Department of Veterans Affairs, and developing 
                strategies for the implementation of best practices.
                    (H) To implement information, tools, products and 
                other interventions determined to be in the best 
                interest of persons with paralysis (including 
                performance criteria for clinicians and psychosocial 
                interventions for veterans and their families).
                    (I) To disseminate findings in scientific peer-
                reviewed journals and other venues deemed appropriate, 
                such as veteran service organization publications.
            (4) Organization of project.--Each QUERI project may use 
        the facilities of a single lead Administration medical center, 
        or be formed from cooperating such centers that meet such 
        requirements as may be prescribed by the Secretary.
            (5) Maintenance of effort.--A grant may be made under 
        paragraph (1) only if, with respect to activities for which the 
        award is authorized to be expended, the applicant for the award 
        agrees to maintain expenditures of non-Federal amounts for such 
        activities at a level that is not less than the level of such 
        expenditures maintained by the applicant for the fiscal year 
        preceding the first fiscal year for which the applicant 
        receives such an award.
    (d) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated in the 
aggregate $25,000,000 for fiscal years 2006 through 2009. Amounts 
appropriated under this section are in addition to any other amounts 
appropriated for such purpose.

SEC. 402. DEFINITIONS.

    For purposes of this title:
            (1) The term ``Administration'' means the Veterans Health 
        Administration of the Department of Veterans Affairs.
            (2) The term ``Secretary'' means the Secretary of Veterans 
        Affairs.
                                 <all>
```