II 

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. 

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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’’. 

6 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. 

7 TITLE I—PARALYSIS RESEARCH 

8 SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES 

9 OF THE NATIONAL INSTITUTES OF HEALTH 

10 WITH RESPECT TO RESEARCH ON PARALYSIS. 

11 (a) IN GENERAL.— 

12 (1) ENHANCED COORDINATION OF ACTIVI13 TIES.—The Director of the National Institutes of 

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

15 may expand and coordinate the activities of such In16 stitutes with respect to research on paralysis. In 

17 order to further expand upon the activities of this 

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1 section, the Director may consider the methods out2 lined in the report under section 2(b) of Public Law 

3 108-427 with respect to spinal cord injury and pa4 ralysis research (relating to the Roadmap for Med5 ical Research of the National Institutes of Health). 

6 (2) ADMINISTRATION OF PROGRAM; COLLABO7 RATION AMONG AGENCIES.—The Director shall carry 

8 out this section acting through the Director of the 

9 National Institute of Neurological Disorders and 

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

11 and in collaboration with any other agencies that the 

12 Director determines appropriate. 

13 (b) COORDINATION.— 

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

15 mechanisms to coordinate the paralysis research and 

16 rehabilitation activities of the agencies of the Na17 tional Institutes of Health in order to further ad18 vance such activities and avoid duplication of activi19 ties. 

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

21 2008, the Director shall prepare a report to Con22 gress that provides a description of the paralysis ac23 tivities of the Institute and strategies for future ac24 tivities. 

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1 (c) CHRISTOPHER AND DANA REEVE PARALYSIS RE2 SEARCH CONSORTIA.— 

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

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

5 nonprofit private entities to pay all or part of the 

6 cost of planning, establishing, improving, and pro7 viding basic operating support for consortia in paral8 ysis research. The Director shall designate each con9 sortium funded under grants as a Christopher and 

10 Dana Reeve Paralysis Research Consortium. 

11 (2) RESEARCH.—Each consortium under para12 graph (1)— 

13 (A) may conduct basic and clinical paral14 ysis research; 

15 (B) may focus on advancing treatments 

16 and developing therapies in paralysis research; 

17 (C) may focus on one or more forms of pa18 ralysis that result from central nervous system 

19 trauma or stroke; 

20 (D) may facilitate and enhance the dis21 semination of clinical and scientific findings; 

22 and 

23 (E) may replicate the findings of consortia 

24 members for scientific and translational pur25 poses. 

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1 (3) COORDINATION OF CONSORTIA; REPORTS.— 

2 The Director may, as appropriate, provide for the 

3 coordination of information among consortia under 

4 paragraph (1) and ensure regular communication 

5 between members of the consortia, and may require 

6 the periodic preparation of reports on the activities 

7 of the consortia and the submission of the reports to 

8 the Director. 

9 (4) ORGANIZATION OF CONSORTIA.—Each con10 sortium under paragraph (1) may use the facilities 

11 of a single lead institution, or be formed from sev12 eral cooperating institutions, meeting such require13 ments as may be prescribed by the Director. 

14 (d) PUBLIC INPUT.—The Director may under sub15 section (a)(1) provide for a mechanism to educate and dis16 seminate information on the existing and planned pro17 grams and research activities of the National Institutes 

18 of Health with respect to paralysis and through which the 

19 Director can receive comments from the public regarding 

20 such programs and activities. 

21 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

22 purpose of carrying out this section, there are authorized 

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

24 fiscal years 2008 through 2011. Amounts appropriated 

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1 under this subsection are in addition to any other amounts 

2 appropriated for such purpose. 

3 TITLE II—PARALYSIS REHABILI4 TATION RESEARCH AND CARE 

5 SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES 

6 OF THE NATIONAL INSTITUTES OF HEALTH 

7 WITH RESPECT TO RESEARCH WITH IMPLICA8 TIONS FOR ENHANCING DAILY FUNCTION 

9 FOR PERSONS WITH PARALYSIS. 

10 (a) IN GENERAL.— 

11 (1) EXPANSION OF ACTIVITIES.—The Director 

12 of the National Institutes of Health (in this section 

13 referred to as the ‘‘Director’’) may expand and co14 ordinate the activities of such Institutes with respect 

15 to research with implications for enhancing daily 

16 function for people with paralysis. 

17 (2) ADMINISTRATION OF PROGRAM; COLLABO18 RATION AMONG AGENCIES.—The Director shall carry 

19 out this section acting through the Director of the 

20 National Institute of Child Health and Human De21 velopment and the National Center for Medical Re22 habilitation Research and in collaboration with the 

23 National Institute of Neurological Disorders and 

24 Stroke, the Centers for Disease Control and Prevenmstockstill on PROD1PC66 with BILLS

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1 tion, and any other agencies that the Director deter2 mines appropriate. 

3 (b) PARALYSIS CLINICAL TRIALS NETWORKS.— 

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

5 awards of grants to public or nonprofit private enti6 ties to pay all or part of the costs of planning, estab7 lishing, improving, and providing basic operating 

8 support to multicenter networks of clinical sites that 

9 will collaborate to design clinical rehabilitation inter10 vention protocols and measures of outcomes on one 

11 or more forms of paralysis that result from central 

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

13 combination of such conditions. 

14 (2) RESEARCH.—Each multicenter clinical trial 

15 network may— 

16 (A) focus on areas of key scientific con17 cern, including— 

18 (i) improving functional mobility; 

19 (ii) promoting behavioral adaptation 

20 to functional losses, especially to prevent 

21 secondary complications; 

22 (iii) assessing the efficacy and out23 comes of medical rehabilitation therapies 

24 and practices and assisting technologies; 

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1 (iv) developing improved assistive 

2 technology to improve function and inde3 pendence; and 

4 (v) understanding whole body system 

5 responses to physical impairments, disabil6 ities, and societal and functional limita7 tions; and 

8 (B) replicate the findings of network mem9 bers for scientific and translation purposes. 

10 (3) COORDINATION OF CLINICAL TRIALS NET11 WORKS; REPORTS.—The Director may, as appro12 priate, provide for the coordination of information 

13 among networks and ensure regular communication 

14 between members of the networks, and may require 

15 the periodic preparation of reports on the activities 

16 of the networks and submission of reports to the Di17 rector. 

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

19 Director shall submit to the Congress a report that pro20 vides a description of research activities with implications 

21 for enhancing daily function for persons with paralysis. 

22 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

23 purpose of carrying out this section, there are authorized 

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

25 fiscal years 2008 through 2011. Amounts appropriated 

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1 under this subsection are in addition to any other amounts 

2 appropriated for such purpose. 

3 TITLE III—IMPROVING QUALITY 

4 OF LIFE FOR PERSONS WITH 

5 PARALYSIS AND OTHER PHYS6 ICAL DISABILITIES 

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

8 PERSONS WITH PARALYSIS AND OTHER 

9 PHYSICAL DISABILITIES. 

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

11 Human Services (in this title referred to as the ‘‘Sec12 retary’’), acting through the Director of the Centers for 

13 Disease Control and Prevention, may study the unique 

14 health challenges associated with paralysis and other phys15 ical disabilities and carry out projects and interventions 

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

17 of persons with paralysis and other physical disabilities. 

18 The Secretary may carry out such projects directly and 

19 through awards of grants or contracts. 

20 (b) CERTAIN ACTIVITIES.—Activities under sub21 section (a) may include— 

22 (1) the development of a national paralysis and 

23 physical disability quality of life action plan, to pro24 mote health and wellness in order to enhance full 

25 participation, independent living, self-sufficiency and 

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1 equality of opportunity in partnership with voluntary 

2 health agencies focused on paralysis and other phys3 ical disabilities, to be carried out in coordination 

4 with the State-based Comprehensive Paralysis and 

5 Other Physical Disability Quality of Life Program of 

6 the Centers for Disease Control and Prevention; 

7 (2) support for programs to disseminate infor8 mation involving care and rehabilitation options and 

9 quality of life grant programs supportive of commu10 nity based programs and support systems for per11 sons with paralysis and other physical disabilities; 

12 (3) in collaboration with other centers and na13 tional voluntary health agencies, establish a hospital14 based paralysis registry and conduct relevant popu15 lation-based research; and 

16 (4) the development of comprehensive, unique 

17 and innovative programs, services, and demonstra18 tions within existing State-based disability and 

19 health programs of the Centers for Disease Control 

20 and Prevention which are designed to support and 

21 advance quality of life programs for persons living 

22 with paralysis and other physical disabilities focus23 ing on— 

24 (A) caregiver education; 

25 (B) physical activity; 

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1 (C) education and awareness programs for 

2 health care providers; 

3 (D) prevention of secondary complications; 

4 (E) home and community-based interven5 tions; 

6 (F) coordinating services and removing 

7 barriers that prevent full participation and inte8 gration into the community; and 

9 (G) recognizing the unique needs of under10 served populations. 

11 (c) GRANTS.—The Secretary may award grants in ac12 cordance with the following: 

13 (1) To State and local health and disability 

14 agencies for the purpose of— 

15 (A) establishing paralysis registries for the 

16 support of relevant population-based research; 

17 (B) developing comprehensive paralysis 

18 and other physical disability action plans and 

19 activities focused on the items listed in sub20 section (b)(4); 

21 (C) assisting State-based programs in es22 tablishing and implementing partnerships and 

23 collaborations that maximize the input and sup24 port of people with paralysis and other physical 

25 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. 

10 SECTION 1. SHORT TITLE. 

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

12 Reeve Paralysis Act’’. 

13 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. 

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1 TITLE I—PARALYSIS RESEARCH 

2 SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES 

3 OF THE NATIONAL INSTITUTES OF HEALTH 

4 WITH RESPECT TO RESEARCH ON PARALYSIS. 

5 (a) COORDINATION.—The Director of the National In6 stitutes of Health (referred to in this Act as the ‘‘Director’’), 

7 pursuant to the general authority of the Director, may de8 velop mechanisms to coordinate the paralysis research and 

9 rehabilitation activities of the Institutes and Centers of the 

10 National Institutes of Health in order to further advance 

11 such activities and avoid duplication of activities. 

12 (b) CHRISTOPHER AND DANA REEVE PARALYSIS RE13 SEARCH CONSORTIA.— 

14 (1) IN GENERAL.—The Director may under sub15 section (a) make awards of grants to public or private 

16 entities to pay all or part of the cost of planning, es17 tablishing, improving, and providing basic operating 

18 support for consortia in paralysis research. The Di19 rector shall designate each consortium funded under 

20 grants as a Christopher and Dana Reeve Paralysis 

21 Research Consortium. 

22 (2) RESEARCH.—Each consortium under para23 graph (1)— 

24 (A) may conduct basic, translational and 

25 clinical paralysis research; 

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1 (B) may focus on advancing treatments and 

2 developing therapies in paralysis research; 

3 (C) may focus on one or more forms of pa4 ralysis that result from central nervous system 

5 trauma or stroke; 

6 (D) may facilitate and enhance the dissemi7 nation of clinical and scientific findings; and 

8 (E) may replicate the findings of consortia 

9 members or other researchers for scientific and 

10 translational purposes. 

11 (3) COORDINATION OF CONSORTIA; REPORTS.— 

12 The Director may, as appropriate, provide for the co13 ordination of information among consortia under 

14 paragraph (1) and ensure regular communication be15 tween members of the consortia, and may require the 

16 periodic preparation of reports on the activities of the 

17 consortia and the submission of the reports to the Di18 rector. 

19 (4) ORGANIZATION OF CONSORTIA.—Each con20 sortium under paragraph (1) may use the facilities of 

21 a single lead institution, or be formed from several co22 operating institutions, meeting such requirements as 

23 may be prescribed by the Director. 

24 (c) PUBLIC INPUT.—The Director may provide for a 

25 mechanism to educate and disseminate information on the 

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1 existing and planned programs and research activities of 

2 the National Institutes of Health with respect to paralysis 

3 and through which the Director can receive comments from 

4 the public regarding such programs and activities. 

5 TITLE II—PARALYSIS REHABILI6 TATION RESEARCH AND CARE 

7 SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES 

8 OF THE NATIONAL INSTITUTES OF HEALTH 

9 WITH RESPECT TO RESEARCH WITH IMPLICA10 TIONS FOR ENHANCING DAILY FUNCTION 

11 FOR PERSONS WITH PARALYSIS. 

12 (a) IN GENERAL.—The Director, pursuant to the gen13 eral authority of the Director, may make awards of grants 

14 to public or private entities to pay all or part of the costs 

15 of planning, establishing, improving, and providing basic 

16 operating support to multicenter networks of clinical sites 

17 that will collaborate to design clinical rehabilitation inter18 vention protocols and measures of outcomes on one or more 

19 forms of paralysis that result from central nervous system 

20 trauma, disorders, or stroke, or any combination of such 

21 conditions. 

22 (b) RESEARCH.—Each multicenter clinical trial net23 work may— 

24 (1) focus on areas of key scientific concern, in25 cluding— 

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1 (A) improving functional mobility; 

2 (B) promoting behavioral adaptation to 

3 functional losses, especially to prevent secondary 

4 complications; 

5 (C) assessing the efficacy and outcomes of 

6 medical rehabilitation therapies and practices 

7 and assisting technologies; 

8 (D) developing improved assistive tech9 nology to improve function and independence; 

10 and 

11 (E) understanding whole body system re12 sponses to physical impairments, disabilities, 

13 and societal and functional limitations; and 

14 (2) replicate the findings of network members for 

15 scientific and translation purposes. 

16 (c) COORDINATION OF CLINICAL TRIALS NETWORKS; 

17 REPORTS.—The Director may, as appropriate, provide for 

18 the coordination of information among networks and ensure 

19 regular communication between members of the networks, 

20 and may require the periodic preparation of reports on the 

21 activities of the networks and submission of reports to the 

22 Director. 

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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 PHYS7 ICAL DISABILITIES. 

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

9 Human Services (in this title referred to as the ‘‘Sec10 retary’’) may study the unique health challenges associated 

11 with paralysis and other physical disabilities and carry out 

12 projects and interventions to improve the quality of life and 

13 long-term health status of persons with paralysis and other 

14 physical disabilities. The Secretary may carry out such 

15 projects directly and through awards of grants or contracts. 

16 (b) CERTAIN ACTIVITIES.—Activities under subsection 

17 (a) may include— 

18 (1) the development of a national paralysis and 

19 physical disability quality of life action plan, to pro20 mote health and wellness in order to enhance full par21 ticipation, independent living, self-sufficiency and 

22 equality of opportunity in partnership with vol23 untary health agencies focused on paralysis and other 

24 physical disabilities, to be carried out in coordination 

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1 with the State-based Disability and Health Program 

2 of the Centers for Disease Control and Prevention; 

3 (2) support for programs to disseminate infor4 mation involving care and rehabilitation options and 

5 quality of life grant programs supportive of commu6 nity based programs and support systems for persons 

7 with paralysis and other physical disabilities; 

8 (3) in collaboration with other centers and na9 tional voluntary health agencies, establish a popu10 lation-based database that may be used for longitu11 dinal and other research on paralysis and other dis12 abling conditions; and 

13 (4) the replication and translation of best prac14 tices and the sharing of information across States, as 

15 well as the development of comprehensive, unique and 

16 innovative programs, services, and demonstrations 

17 within existing State-based disability and health pro18 grams of the Centers for Disease Control and Preven19 tion which are designed to support and advance qual20 ity of life programs for persons living with paralysis 

21 and other physical disabilities focusing on— 

22 (A) caregiver education; 

23 (B) promoting proper nutrition, increasing 

24 physical activity, and reducing tobacco use; 

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1 (C) education and awareness programs for 

2 health care providers; 

3 (D) prevention of secondary complications; 

4 (E) home and community-based interven5 tions; 

6 (F) coordinating services and removing bar7 riers that prevent full participation and integra8 tion into the community; and 

9 (G) recognizing the unique needs of under10 served populations. 

11 (c) GRANTS.—The Secretary may award grants in ac12 cordance with the following: 

13 (1) To State and local health and disability 

14 agencies for the purpose of— 

15 (A) establishing a population-based data16 base that may be used for longitudinal and other 

17 research on paralysis and other disabling condi18 tions; 

19 (B) developing comprehensive paralysis and 

20 other physical disability action plans and activi21 ties focused on the items listed in subsection 

22 (b)(4); 

23 (C) assisting State-based programs in estab24 lishing and implementing partnerships and col25 laborations that maximize the input and support 

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1 of people with paralysis and other physical dis2 abilities and their constituent organizations; 

3 (D) coordinating paralysis and physical 

4 disability activities with existing State-based 

5 disability and health programs; 

6 (E) providing education and training op7 portunities and programs for health professionals 

8 and allied caregivers; and 

9 (F) developing, testing, evaluating, and rep10 licating effective intervention programs to main11 tain or improve health and quality of life. 

12 (2) To private health and disability organiza13 tions for the purpose of— 

14 (A) disseminating information to the pub15 lic; 

16 (B) improving access to services for persons 

17 living with paralysis and other physical disabil18 ities and their caregivers; 

19 (C) testing model intervention programs to 

20 improve health and quality of life; and 

21 (D) coordinating existing services with 

22 State-based disability and health programs. 

23 (d) COORDINATION OF ACTIVITIES.—The Secretary 

24 shall ensure that activities under this section are coordimstockstill on PROD1PC66 with BILLS

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1 nated as appropriate with other agencies of the Department 

2 of Health and Human Services. 

3 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

4 purpose of carrying out this section, there are authorized 

5 to be appropriated $25,000,000 for each of fiscal years 2008 

6 through 2011. 

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Calendar No. 326 

110TH CONGRESS 

1ST SESSION S. 1183 

A BILL 

To enhance and further research into paralysis and 

ical disabilities, and for other purposes. for persons living with paralysis and other physto improve rehabilitation and the quality of life 

AUGUST 3, 2007 

Reported with an amendment 

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