I 

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.

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 Reeve Pa5 ralysis 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. 

TITLE IV—ACTIVITIES OF THE DEPARTMENT OF VETERANS 

AFFAIRS 

Sec. 401. Expansion and coordination of activities of the Veterans Health Administration. 

Sec. 402. Definitions.

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 
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1 108–427 with respect to spinal cord injury and pa2 ralysis research (relating to the Roadmap for Med3 ical Research of the National Institutes of Health). 

4 (2) ADMINISTRATION OF PROGRAM; COLLABO5 RATION AMONG AGENCIES.—The Director shall carry 

6 out this section acting through the Director of the 

7 National Institute of Neurological Disorders and 

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

9 and in collaboration with any other agencies that the 

10 Director determines appropriate. 

11 (b) COORDINATION.—

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

13 mechanisms to coordinate the paralysis research and 

14 rehabilitation activities of the agencies of the Na15 tional Institutes of Health in order to further ad16 vance such activities and avoid duplication of activi17 ties. 

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

19 2005, the Director shall prepare a report to Con20 gress that provides a description of the paralysis ac21 tivities of the Institute and strategies for future ac22 tivities. 

23 (c) CHRISTOPHER REEVE PARALYSIS RESEARCH

24 CONSORTIA.—
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1 (1) IN GENERAL.—The Director may under 

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

3 nonprofit private entities to pay all or part of the 

4 cost of planning, establishing, improving, and pro5 viding basic operating support for consortia in paral6 ysis research. The Director shall designate each con7 sortium funded under grants as a Christopher Reeve 

8 Paralysis Research Consortium. 

9 (2) RESEARCH.—Each consortium under para10 graph (1)—

11 (A) may conduct basic and clinical paral12 ysis research; 

13 (B) may focus on advancing treatments 

14 and developing therapies in paralysis research; 

15 (C) may focus on one or more forms of pa16 ralysis that result from central nervous system 

17 trauma or stroke; 

18 (D) may facilitate and enhance the dis19 semination of clinical and scientific findings; 

20 and 

21 (E) may replicate the findings of consortia 

22 members for scientific and translational pur23 poses. 

24 (3) COORDINATION OF CONSORTIA; REPORTS.—

25 The Director may, as appropriate, provide for the 
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1 coordination of information among consortia under 

2 paragraph (1) and ensure regular communication 

3 between members of the consortia, and may require 

4 the periodic preparation of reports on the activities 

5 of the consortia and the submission of the reports to 

6 the Director. 

7 (4) ORGANIZATION OF CONSORTIA.—Each con8 sortium under paragraph (1) may use the facilities 

9 of a single lead institution, or be formed from sev10 eral cooperating institutions, meeting such require11 ments as may be prescribed by the Director. 

12 (d) PUBLIC INPUT.—The Director may under sub13 section (a)(1) provide for a mechanism to educate and dis14 seminate information on the existing and planned pro15 grams and research activities of the National Institutes 

16 of Health with respect to paralysis and through which the 

17 Director can receive comments from the public regarding 

18 such programs and activities. 

19 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

20 purpose of carrying out this section, there are authorized 

21 to be appropriated in the aggregate $25,000,000 for the 

22 fiscal years 2006 through 2009. Amounts appropriated 

23 under this subsection are in addition to any other amounts 

24 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 on Child Health and Human De19 velopment and the National Center for Medical Re20 habilitation Research and in collaboration with the 

21 National Institute on 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, 2005, 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 in the aggregate $25,000,000 for the 

22 fiscal years 2006 through 2009. 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) 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 

25 health agencies focused on paralysis and other phys-
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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 dis3 ability 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 assure 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, 2005, 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 in the aggregate $25,000,000 for the 

9 fiscal years 2006 through 2009. 

10 TITLE IV—ACTIVITIES OF THE 

11 DEPARTMENT OF VETERANS 

12 AFFAIRS 

13 SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES 

14 OF THE VETERANS HEALTH ADMINISTRA15 TION. 

16 (a) IN GENERAL.—

17 (1) ENHANCED COORDINATION OF ACTIVI18 TIES.—The Secretary of Veterans Affairs may ex19 pand and coordinate activities of the Veterans 

20 Health Administration of the Department of Vet21 erans Affairs with respect to research on paralysis. 

22 (2) ADMINISTRATION OF PROGRAM.—The Sec23 retary shall carry out this section through the Chief 

24 Research and Development Officer of the Adminis25 tration and in collaboration with the National Insti-
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1 tutes of Health and other agencies the Secretary de2 termines appropriate. 

3 (b) ESTABLISHMENT OF PARALYSIS RESEARCH, 

4 EDUCATION, AND CLINICAL CARE.—

5 (1) IN GENERAL.—The Secretary may establish 

6 within the Department of Veterans Affairs centers 

7 to be known as Paralysis Research, Education and 

8 Clinical Care Centers. Such centers shall be estab9 lished through the award of grants to Administra10 tion medical centers that are affiliated with medical 

11 schools or other organizations the Secretary con12 siders appropriate. Such grants may be used to pay 

13 all or part of the costs of planning, establishing, im14 proving, and providing basic operating support for 

15 such centers. 

16 (2) RESEARCH.—Each center under paragraph 

17 (1)—

18 (A) may focus on basic biomedical research 

19 on the types of paralysis that result from 

20 neurologic dysfunction, neurodegeneration, or 

21 trauma; 

22 (B) may focus on clinical science research 

23 on the types of paralysis that result from 

24 neurologic dysfunction, neurodegeneration, or 

25 trauma; 
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1 (C) may focus on rehabilitation research 

2 on the types of paralysis that result from 

3 neurologic dysfunction, neurodegeneration, or 

4 trauma; 

5 (D) may focus on health services research 

6 on the types of paralysis that result from 

7 neurologic dysfunction, neurodegeneration, or 

8 trauma to improve health outcomes, increase 

9 the cost-effectiveness of service, and implement 

10 best practices in the treatment of such types of 

11 paralysis; and 

12 (E) may facilitate and enhance the dis13 semination of scientific findings and evidence14 based practices. 

15 (3) COORDINATION OF CENTERS INTO CON16 SORTIA.—The Secretary may, as appropriate, pro17 vide for the linkage and coordination of information 

18 among centers under paragraph (1) in order to cre19 ate national consortia of centers and to ensure reg20 ular communications between members of the cen21 ters. Each consortium—-

22 (A) may expand the capacity of its Admin23 istration medical centers to conduct basic, clin24 ical, rehabilitation, and health-sciences research 
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1 with respect to paralysis by increasing the avail2 able research resources; 

3 (B) may identify gaps in research, clinical 

4 service, or implementation strategies; 

5 (C) may operate as a multidisciplinary re6 search and clinical care team to determine best 

7 practices, to develop standards of care, and to 

8 establish guidelines for implementation through9 out the Department of Veterans Affairs; and 

10 (D) may use the facilities of a single lead 

11 institution, or facilities formed from several co12 operating institutions, that meet such require13 ments as prescribed by the Secretary and—

14 (i) may provide core funding that will 

15 enhance ongoing research by bringing to16 gether paralysis health care and research 

17 communities in a manner that will enrich 

18 the effectiveness of clinical care, present 

19 research and future directions; and 

20 (ii) may include administrative, re21 search, clinical, educational and implemen22 tation cores, other cores may be proposed. 

23 (4) COORDINATION OF INFORMATION; RE24 PORTS.—The Secretary may, as appropriate, provide 

25 for the coordination of information among centers 
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1 and consortia under this section and ensure regular 

2 communication with respect to the activities of the 

3 centers and consortia, and may require the periodic 

4 preparation of reports on the activities of the centers 

5 and consortia, and require the submission of such 

6 reports. 

7 (c) ESTABLISHMENT OF QUALITY ENHANCEMENT

8 RESEARCH INITIATIVES FOR PARALYSIS.—

9 (1) IN GENERAL.—The Secretary may make 

10 grants to Administration medical centers for the 

11 purpose of carrying out projects to translate clinical 

12 findings and recommendations with respect to paral13 ysis into evidence-based best practices for use by the 

14 Administration. Such projects shall be designated by 

15 the Secretary as Quality Enhancement Research Ini16 tiative projects (referred to in this subsection as 

17 ‘‘QUERI projects’’). 

18 (2) REQUIREMENT.—A grant may be made 

19 under paragraph (1) to an Administration medical 

20 center only if the center is affiliated with a school 

21 of medicine or with another entity determined by the 

22 Secretary to be appropriate. 

23 (3) CERTAIN USES OF GRANT.—The activities 

24 for which a grant under paragraph (1) may be ex25 pended by a QUERI project include the following: 
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1 (A) To pay all or part of the costs of plan2 ning, establishing, improving and providing 

3 basic operating support for the project. 

4 (B) To work toward implementing best 

5 practices identified under paragraph (1) 

6 throughout the Administration through efforts 

7 to facilitate comprehensive organizational 

8 change, and to evaluate and refine such imple9 mentation efforts through the collection, anal10 ysis, and reporting of data on critical patient 

11 outcomes and system performance. 

12 (C) To identify high-risk or high-volume 

13 primary or secondary consequences of paralysis 

14 that results from neurologic dysfunction, 

15 neurodegeneration, or trauma. 

16 (D) To systematically examine quality of 

17 care for persons with paralysis from neurologic 

18 dysfunction, neurodegeneration, or trauma. 

19 (E) To define existing practice patterns 

20 and outcomes for persons with paralysis 

21 throughout the Administration and current var22 iation from best practices both within and out23 side of the Department of Veterans Affairs. 

24 (F) To enhance ongoing research by bring25 ing together paralysis clinical care and health 
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1 service research communities to identify the 

2 health care needs of the paralysis community, 

3 examine standard practices, determine best 

4 practices and to implement best practices for 

5 persons with paralysis and their families. 

6 (G) To formulate health service research 

7 protocols aimed at determining paralysis-care 

8 related best practices, closing the gap between 

9 current practices in paralysis care in the De10 partment of Veterans Affairs, assessing the best 

11 practices within and outside of the Department 

12 of Veterans Affairs, and developing strategies 

13 for the implementation of best practices. 

14 (H) To implement information, tools, prod15 ucts and other interventions determined to be in 

16 the best interest of persons with paralysis (in17 cluding performance criteria for clinicians and 

18 psychosocial interventions for veterans and their 

19 families). 

20 (I) To disseminate findings in scientific 

21 peer-reviewed journals and other venues deemed 

22 appropriate, such as veteran service organiza23 tion publications. 

24 (4) ORGANIZATION OF PROJECT.—Each 

25 QUERI project may use the facilities of a single 
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1 lead Administration medical center, or be formed 

2 from cooperating such centers that meet such re3 quirements as may be prescribed by the Secretary. 

4 (5) MAINTENANCE OF EFFORT.—A grant may 

5 be made under paragraph (1) only if, with respect 

6 to activities for which the award is authorized to be 

7 expended, the applicant for the award agrees to 

8 maintain expenditures of non-Federal amounts for 

9 such activities at a level that is not less than the 

10 level of such expenditures maintained by the appli11 cant for the fiscal year preceding the first fiscal year 

12 for which the applicant receives such an award. 

13 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

14 purpose of carrying out this section, there are authorized 

15 to be appropriated in the aggregate $25,000,000 for fiscal 

16 years 2006 through 2009. Amounts appropriated under 

17 this section are in addition to any other amounts appro18 priated for such purpose. 

19 SEC. 402. DEFINITIONS. 

20 For purposes of this title: 

21 (1) The term ‘‘Administration’’ means the Vet22 erans Health Administration of the Department of 

23 Veterans Affairs. 
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1 (2) The term ‘‘Secretary’’ means the Secretary 

2 of Veterans Affairs.

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