I 

111TH CONGRESS 

1ST SESSION H. R. 307 

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 

JANUARY 8, 2009 

Ms. BALDWIN (for herself, Mrs. BONO MACK, Mr. LANGEVIN, and Mr. BILIRAKIS) introduced the following bill; which was referred to the Committee 

on Energy and Commerce 

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’’. 

6 SEC. 2. TABLE OF CONTENTS. 

Sec. 1. Short title. 

Sec. 2. Table of contents. 


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TITLE I—PARALYSIS RESEARCH 

Sec. 101. Activities of the National Institutes of Health with respect to research on paralysis. 

TITLE II—PARALYSIS REHABILITATION RESEARCH AND CARE 

Sec. 201. 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. 

1 TITLE I—PARALYSIS RESEARCH 

2 SEC. 101. ACTIVITIES OF THE NATIONAL INSTITUTES OF 

3 HEALTH WITH RESPECT TO RESEARCH ON 

4 PARALYSIS. 

5 (a) COORDINATION.—The Director of the National 

6 Institutes of Health (referred to in this Act as the ‘‘Direc7 tor’’), pursuant to the general authority of the Director, 

8 may develop mechanisms to coordinate the paralysis re9 search and rehabilitation activities of the Institutes and 

10 Centers of the National Institutes of Health in order to 

11 further advance such activities and avoid duplication of 

12 activities. 

13 (b) CHRISTOPHER AND DANA REEVE PARALYSIS RE14 SEARCH CONSORTIA.— 

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

16 awards of grants to public or private entities to pay 

17 all or part of the cost of planning, establishing, im18 proving, and providing basic operating support for 


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1 consortia in paralysis research. The Director shall 

2 designate each consortium funded through such 

3 grants as a Christopher and Dana Reeve Paralysis 

4 Research Consortium. 

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

7 (A) may conduct basic, translational, and 

8 clinical paralysis 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 or other researchers for scientific and 

19 translational purposes. 

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

9 mechanism to educate and disseminate information on the 

10 existing and planned programs and research activities of 

11 the National Institutes of Health with respect to paralysis 

12 and through which the Director can receive comments 

13 from the public regarding such programs and activities. 

14 TITLE II—PARALYSIS REHABILI15 TATION RESEARCH AND CARE 

16 SEC. 201. ACTIVITIES OF THE NATIONAL INSTITUTES OF 

17 HEALTH WITH RESPECT TO RESEARCH WITH 

18 IMPLICATIONS FOR ENHANCING DAILY FUNC19 TION FOR PERSONS WITH PARALYSIS. 

20 (a) IN GENERAL.—The Director, pursuant to the 

21 general authority of the Director, may make awards of 

22 grants to public or private entities to pay all or part of 

23 the costs of planning, establishing, improving, and pro24 viding basic operating support to multicenter networks of 

25 clinical sites that will collaborate to design clinical rehaVerDate Nov 24 2008 00:27 Jan 12, 2009 Jkt 079200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H307.IH H307

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1 bilitation intervention protocols and measures of outcomes 

2 on one or more forms of paralysis that result from central 

3 nervous system trauma, disorders, or stroke, or any com4 bination of such conditions. 

5 (b) RESEARCH.—A multicenter network of clinical 

6 sites funded through this section may— 

7 (1) focus on areas of key scientific concern, in8 cluding— 

9 (A) improving functional mobility; 

10 (B) promoting behavioral adaptation to 

11 functional losses, especially to prevent sec12 ondary complications; 

13 (C) assessing the efficacy and outcomes of 

14 medical rehabilitation therapies and practices 

15 and assisting technologies; 

16 (D) developing improved assistive tech17 nology to improve function and independence; 

18 and 

19 (E) understanding whole body system re20 sponses to physical impairments, disabilities, 

21 and societal and functional limitations; and 

22 (2) replicate the findings of network members 

23 or other researchers for scientific and translation 

24 purposes. 


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1 (c) COORDINATION OF CLINICAL TRIALS NETWORKS; 

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

3 the coordination of information among networks funded 

4 through this section and ensure regular communication 

5 among members of the networks, and may require the 

6 periodic preparation of reports on the activities of the net7 works and submission of reports to the Director. 

8 TITLE III—IMPROVING QUALITY 

9 OF LIFE FOR PERSONS WITH 

10 PARALYSIS AND OTHER PHYS11 ICAL DISABILITIES 

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

13 PERSONS WITH PARALYSIS AND OTHER 

14 PHYSICAL DISABILITIES. 

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

16 Human Services (in this title referred to as the ‘‘Sec17 retary’’) may study the unique health challenges associ18 ated with paralysis and other physical disabilities and 

19 carry out projects and interventions to improve the quality 

20 of life and long-term health status of persons with paral21 ysis and other physical disabilities. The Secretary may 

22 carry out such projects directly and through awards of 

23 grants or contracts. 

24 (b) CERTAIN ACTIVITIES.—Activities under sub25 section (a) may include— 


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1 (1) the development of a national paralysis and 

2 physical disability quality of life action plan, to pro3 mote health and wellness in order to enhance full 

4 participation, independent living, self-sufficiency, 

5 and equality of opportunity in partnership with vol6 untary health agencies focused on paralysis and 

7 other physical disabilities, to be carried out in co8 ordination with the State-based Disability and 

9 Health Program of the Centers for Disease Control 

10 and Prevention; 

11 (2) support for programs to disseminate infor12 mation involving care and rehabilitation options and 

13 quality of life grant programs supportive of commu14 nity-based programs and support systems for per15 sons with paralysis and other physical disabilities; 

16 (3) in collaboration with other centers and na17 tional voluntary health agencies, the establishment 

18 of a population-based database that may be used for 

19 longitudinal and other research on paralysis and 

20 other disabling conditions; and 

21 (4) the replication and translation of best prac22 tices and the sharing of information across States, 

23 as well as the development of comprehensive, unique, 

24 and innovative programs, services, and demonstra25 tions within existing State-based disability and 


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1 health programs of the Centers for Disease Control 

2 and Prevention which are designed to support and 

3 advance quality of life programs for persons living 

4 with paralysis and other physical disabilities focus5 ing on— 

6 (A) caregiver education; 

7 (B) promoting proper nutrition, increasing 

8 physical activity, and reducing tobacco use; 

9 (C) education and awareness programs for 

10 health care providers; 

11 (D) prevention of secondary complications; 

12 (E) home- and community-based interven13 tions; 

14 (F) coordinating services and removing 

15 barriers that prevent full participation and inte16 gration into the community; and 

17 (G) recognizing the unique needs of under18 served populations. 

19 (c) GRANTS.—The Secretary may award grants in ac20 cordance with the following: 

21 (1) To State and local health and disability 

22 agencies for the purpose of— 

23 (A) establishing a population-based data24 base that may be used for longitudinal and 


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1 other research on paralysis and other disabling 

2 conditions; 

3 (B) developing comprehensive paralysis 

4 and other physical disability action plans and 

5 activities focused on the items listed in sub6 section (b)(4); 

7 (C) assisting State-based programs in es8 tablishing and implementing partnerships and 

9 collaborations that maximize the input and sup10 port of people with paralysis and other physical 

11 disabilities and their constituent organizations; 

12 (D) coordinating paralysis and physical 

13 disability activities with existing State-based 

14 disability and health programs; 

15 (E) providing education and training op16 portunities and programs for health profes17 sionals and allied caregivers; and 

18 (F) developing, testing, evaluating, and 

19 replicating effective intervention programs to 

20 maintain or improve health and quality of life. 

21 (2) To private health and disability organiza22 tions for the purpose of— 

23 (A) disseminating information to the pub24 lic; 


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1 (B) improving access to services for per2 sons living with paralysis and other physical 

3 disabilities and their caregivers; 

4 (C) testing model intervention programs to 

5 improve health and quality of life; and 

6 (D) coordinating existing services with 

7 State-based disability and health programs. 

8 (d) COORDINATION OF ACTIVITIES.—The Secretary 

9 shall ensure that activities under this section are coordi10 nated as appropriate by the agencies of the Department 

11 of Health and Human Services. 

12 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

13 purpose of carrying out this section, there is authorized 

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

15 2010 through 2013. 

Æ 


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