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.

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

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.

END