II 

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, and Mr. BROWN) 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Christopher and Dana 

5 Reeve Paralysis Act’’. 

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1 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. 

2 TITLE I—PARALYSIS RESEARCH 

3 SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH ON PARALYSIS. 

6 (a) IN GENERAL.— 

7 (1) ENHANCED COORDINATION OF ACTIVI8 TIES.—The Director of the National Institutes of 

9 Health (in this section referred to as the ‘‘Director’’) 

10 may expand and coordinate the activities of such In11 stitutes with respect to research on paralysis. In 

12 order to further expand upon the activities of this 

13 section, the Director may consider the methods out14 lined in the report under section 2(b) of Public Law 

15 108-427 with respect to spinal cord injury and pa16 ralysis research (relating to the Roadmap for Med17 ical Research of the National Institutes of Health). 

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1 (2) ADMINISTRATION OF PROGRAM; COLLABO2 RATION AMONG AGENCIES.—The Director shall carry 

3 out this section acting through the Director of the 

4 National Institute of Neurological Disorders and 

5 Stroke (in this section referred to as the ‘‘Institute’’) 

6 and in collaboration with any other agencies that the 

7 Director determines appropriate. 

8 (b) COORDINATION.— 

9 (1) IN GENERAL.—The Director may develop 

10 mechanisms to coordinate the paralysis research and 

11 rehabilitation activities of the agencies of the Na12 tional Institutes of Health in order to further ad13 vance such activities and avoid duplication of activi14 ties. 

15 (2) REPORT.—Not later than December 1, 

16 2008, the Director shall prepare a report to Con17 gress that provides a description of the paralysis ac18 tivities of the Institute and strategies for future ac19 tivities. 

20 (c) CHRISTOPHER AND DANA REEVE PARALYSIS RE21 SEARCH CONSORTIA.— 

22 (1) IN GENERAL.—The Director may under 

23 subsection (a)(1) make awards of grants to public or 

24 nonprofit private entities to pay all or part of the 

25 cost of planning, establishing, improving, and proVerDate Aug 31 2005 00:57 Apr 24, 2007 Jkt 059196 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183
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1 viding basic operating support for consortia in paral2 ysis research. The Director shall designate each con3 sortium funded under grants as a Christopher and 

4 Dana Reeve Paralysis Research Consortium. 

5 (2) RESEARCH.—Each consortium under para6 graph (1)— 

7 (A) may conduct basic and clinical paral8 ysis research; 

9 (B) may focus on advancing treatments 

10 and developing therapies in paralysis research; 

11 (C) may focus on one or more forms of pa12 ralysis that result from central nervous system 

13 trauma or stroke; 

14 (D) may facilitate and enhance the dis15 semination of clinical and scientific findings; 

16 and 

17 (E) may replicate the findings of consortia 

18 members for scientific and translational pur19 poses. 

20 (3) COORDINATION OF CONSORTIA; REPORTS.— 

21 The Director may, as appropriate, provide for the 

22 coordination of information among consortia under 

23 paragraph (1) and ensure regular communication 

24 between members of the consortia, and may require 

25 the periodic preparation of reports on the activities 

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1 of the consortia and the submission of the reports to 

2 the Director. 

3 (4) ORGANIZATION OF CONSORTIA.—Each con4 sortium under paragraph (1) may use the facilities 

5 of a single lead institution, or be formed from sev6 eral cooperating institutions, meeting such require7 ments as may be prescribed by the Director. 

8 (d) PUBLIC INPUT.—The Director may under sub9 section (a)(1) provide for a mechanism to educate and dis10 seminate information on the existing and planned pro11 grams and research activities of the National Institutes 

12 of Health with respect to paralysis and through which the 

13 Director can receive comments from the public regarding 

14 such programs and activities. 

15 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

16 purpose of carrying out this section, there are authorized 

17 to be appropriated such sums as may be necessary for the 

18 fiscal years 2008 through 2011. Amounts appropriated 

19 under this subsection are in addition to any other amounts 

20 appropriated for such purpose. 

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1 TITLE II—PARALYSIS REHABILI2 TATION RESEARCH AND CARE 

3 SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH WITH IMPLICA6 TIONS FOR ENHANCING DAILY FUNCTION 

7 FOR PERSONS WITH PARALYSIS. 

8 (a) IN GENERAL.— 

9 (1) EXPANSION OF ACTIVITIES.—The Director 

10 of the National Institutes of Health (in this section 

11 referred to as the ‘‘Director’’) may expand and co12 ordinate the activities of such Institutes with respect 

13 to research with implications for enhancing daily 

14 function for people with paralysis. 

15 (2) ADMINISTRATION OF PROGRAM; COLLABO16 RATION AMONG AGENCIES.—The Director shall carry 

17 out this section acting through the Director of the 

18 National Institute of Child Health and Human De19 velopment and the National Center for Medical Re20 habilitation Research and in collaboration with the 

21 National Institute of Neurological Disorders and 

22 Stroke, the Centers for Disease Control and Preven23 tion, and any other agencies that the Director deter24 mines appropriate. 

25 (b) PARALYSIS CLINICAL TRIALS NETWORKS.— 

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1 (1) IN GENERAL.—The Director may make 

2 awards of grants to public or nonprofit private enti3 ties to pay all or part of the costs of planning, estab4 lishing, improving, and providing basic operating 

5 support to multicenter networks of clinical sites that 

6 will collaborate to design clinical rehabilitation inter7 vention protocols and measures of outcomes on one 

8 or more forms of paralysis that result from central 

9 nervous system trauma, disorders, or stroke, or any 

10 combination of such conditions. 

11 (2) RESEARCH.—Each multicenter clinical trial 

12 network may— 

13 (A) focus on areas of key scientific con14 cern, including— 

15 (i) improving functional mobility; 

16 (ii) promoting behavioral adaptation 

17 to functional losses, especially to prevent 

18 secondary complications; 

19 (iii) assessing the efficacy and out20 comes of medical rehabilitation therapies 

21 and practices and assisting technologies; 

22 (iv) developing improved assistive 

23 technology to improve function and inde24 pendence; and 

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1 (v) understanding whole body system 

2 responses to physical impairments, disabil3 ities, and societal and functional limita4 tions; and 

5 (B) replicate the findings of network mem6 bers for scientific and translation purposes. 

7 (3) COORDINATION OF CLINICAL TRIALS NET8 WORKS; REPORTS.—The Director may, as appro9 priate, provide for the coordination of information 

10 among networks and ensure regular communication 

11 between members of the networks, and may require 

12 the periodic preparation of reports on the activities 

13 of the networks and submission of reports to the Di14 rector. 

15 (c) REPORT.—Not later than December 1, 2008, the 

16 Director shall submit to the Congress a report that pro17 vides a description of research activities with implications 

18 for enhancing daily function for persons with paralysis. 

19 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

20 purpose of carrying out this section, there are authorized 

21 to be appropriated such sums as may be necessary for the 

22 fiscal years 2008 through 2011. Amounts appropriated 

23 under this subsection are in addition to any other amounts 

24 appropriated for such purpose. 

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1 TITLE III—IMPROVING QUALITY 

2 OF LIFE FOR PERSONS WITH 

3 PARALYSIS AND OTHER PHYS4 ICAL DISABILITIES 

5 SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR 

6 PERSONS WITH PARALYSIS AND OTHER 

7 PHYSICAL DISABILITIES. 

8 (a) IN GENERAL.—The Secretary of Health and 

9 Human Services (in this title referred to as the ‘‘Sec10 retary’’), acting through the Director of the Centers for 

11 Disease Control and Prevention, may study the unique 

12 health challenges associated with paralysis and other phys13 ical disabilities and carry out projects and interventions 

14 to improve the quality of life and long-term health status 

15 of persons with paralysis and other physical disabilities. 

16 The Secretary may carry out such projects directly and 

17 through awards of grants or contracts. 

18 (b) CERTAIN ACTIVITIES.—Activities under sub19 section (a) may include— 

20 (1) the development of a national paralysis and 

21 physical disability quality of life action plan, to pro22 mote health and wellness in order to enhance full 

23 participation, independent living, self-sufficiency and 

24 equality of opportunity in partnership with voluntary 

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1 ical disabilities, to be carried out in coordination 

2 with the State-based Comprehensive Paralysis and 

3 Other Physical Disability Quality of Life Program of 

4 the Centers for Disease Control and Prevention; 

5 (2) support for programs to disseminate infor6 mation involving care and rehabilitation options and 

7 quality of life grant programs supportive of commu8 nity based programs and support systems for per9 sons with paralysis and other physical disabilities; 

10 (3) in collaboration with other centers and na11 tional voluntary health agencies, establish a hospital12 based paralysis registry and conduct relevant popu13 lation-based research; and 

14 (4) the development of comprehensive, unique 

15 and innovative programs, services, and demonstra16 tions within existing State-based disability and 

17 health programs of the Centers for Disease Control 

18 and Prevention which are designed to support and 

19 advance quality of life programs for persons living 

20 with paralysis and other physical disabilities focus21 ing on— 

22 (A) caregiver education; 

23 (B) physical activity; 

24 (C) education and awareness programs for 

25 health care providers; 

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1 (D) prevention of secondary complications; 

2 (E) home and community-based interven3 tions; 

4 (F) coordinating services and removing 

5 barriers that prevent full participation and inte6 gration into the community; and 

7 (G) recognizing the unique needs of under8 served populations. 

9 (c) GRANTS.—The Secretary may award grants in ac10 cordance with the following: 

11 (1) To State and local health and disability 

12 agencies for the purpose of— 

13 (A) establishing paralysis registries for the 

14 support of relevant population-based research; 

15 (B) developing comprehensive paralysis 

16 and other physical disability action plans and 

17 activities focused on the items listed in sub18 section (b)(4); 

19 (C) assisting State-based programs in es20 tablishing and implementing partnerships and 

21 collaborations that maximize the input and sup22 port of people with paralysis and other physical 

23 disabilities and their constituent organizations; 

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1 (D) coordinating paralysis and physical 

2 disability activities with existing State-based 

3 disability and health programs; 

4 (E) providing education and training op5 portunities and programs for health profes6 sionals and allied caregivers; and 

7 (F) developing, testing, evaluating, and 

8 replicating effective intervention programs to 

9 maintain or improve health and quality of life. 

10 (2) To nonprofit private health and disability 

11 organizations for the purpose of— 

12 (A) disseminating information to the pub13 lic; 

14 (B) improving access to services for per15 sons living with paralysis and other physical 

16 disabilities and their caregivers; 

17 (C) testing model intervention programs to 

18 improve health and quality of life; and 

19 (D) coordinating existing services with 

20 State-based disability and health programs. 

21 (d) COORDINATION OF ACTIVITIES.—The Secretary 

22 shall ensure that activities under this section are coordi23 nated as appropriate with other agencies of the Public 

24 Health Service. 

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1 (e) REPORT TO CONGRESS.—Not later than Decem2 ber 1, 2008, the Secretary shall submit to the Congress 

3 a report describing the results of the evaluation under sub4 section (a), and as applicable, the strategies developed 

5 under such subsection. 

6 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

7 purpose of carrying out this section, there are authorized 

8 to be appropriated such sums as may be necessary for the 

9 fiscal years 2008 through 2011. 

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