```

[House Report 111-45]
[From the U.S. Government Publishing Office]

111th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 1st Session                                                     111-45
======================================================================
 
                CHRISTOPHER AND DANA REEVE PARALYSIS ACT

                                _______
                                

 March 23, 2009.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

 Mr. Waxman, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 307]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (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, having considered the 
same, report favorably thereon without amendment and recommend 
that the bill do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     1
Background and Need for Legislation..............................     2
Hearings.........................................................     2
Committee Consideration..........................................     2
Committee Votes..................................................     3
Committee Oversight Findings.....................................     3
Statement of General Performance Goals and Objectives............     3
New Budget Authority, Entitlement Authority, and Tax Expenditures     3
Earmarks and Tax and Tariff Benefits.............................     3
Committee Cost Estimate..........................................     4
Congressional Budget Office Estimate.............................     4
Federal Mandates Statement.......................................     5
Advisory Committee Statement.....................................     5
Constitutional Authority Statement...............................     6
Applicability to Legislative Branch..............................     6
Section-by-Section Analysis of the Legislation...................     6

                          Purpose and Summary

    The purpose of H.R. 307, the ``Christopher and Dana Reeve 
Paralysis Act'', is 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, among other purposes. The bill authorizes the 
appropriation of $25 million for each of the fiscal years 2010 
through 2013 for the Secretary of Health and Human Services to 
carry out projects and interventions to improve the quality of 
life and long-term health status of persons with paralysis and 
other physical disabilities. In addition, the bill authorizes 
the Director of the National Institutes of Health to develop 
mechanisms to coordinate research on paralysis and to support 
multicenter networks of clinical sites that will collaborate to 
design clinical rehabilitation protocols and measures of 
outcomes of interventions for persons with paralysis.

                  Background and Need for Legislation

    It is estimated that a quarter of a million Americans are 
currently living with spinal cord injuries and approximately 4 
to 5 million Americans are living with paralysis of the 
extremities. There are an estimated 10,000 to 12,000 spinal 
cord injuries every year in the United States.
    Spinal cord injuries often occur because, although the hard 
bones of the spinal column protect the soft tissues of the 
spinal cord, vertebrae can still be broken or dislocated in a 
variety of ways and cause traumatic injury to the spinal cord. 
Injuries can occur at any level of the spinal cord. The segment 
of the cord that is injured, and the severity of the injury, 
will determine which body functions are compromised or lost. 
Because the spinal cord acts as the main information pathway 
between the brain and the rest of the body, a spinal cord 
injury can have significant physiological consequences.
    Catastrophic falls, being thrown from a horse or through a 
windshield, or any kind of physical trauma that crushes and 
compresses the vertebrae in the neck, can cause irreversible 
damage at the cervical level of the spinal cord and below. 
Paralysis of most of the body including the arms and legs, 
called quadriplegia, is the likely result. Automobile accidents 
are often responsible for spinal cord damage in the middle 
back--the thoracic or lumbar area--which can cause paralysis of 
the lower trunk and lower extremities, called paraplegia.
    Most injuries to the spinal cord do not completely sever 
the spinal cord. Instead, an injury is more likely to cause 
fractures and compression of the vertebrae, which then crush 
and destroy the axons, extensions of nerve cells that carry 
signals up and down the spinal cord between the brain and the 
rest of the body. An injury to the spinal cord can damage a 
few, many, or nearly all of these axons. Some injuries will 
allow almost complete recovery, while others will result in 
complete paralysis.

                                Hearings

    The Committee on Energy and Commerce did not hold hearings 
on the legislation.

                        Committee Consideration

    The Committee on Energy and Commerce met in open markup 
session on Wednesday, March 4, 2009, and, pursuant to a motion 
by Mr. Waxman, agreed by unanimous consent to consider and 
approve H.R. 307 and several other bills en bloc. H.R. 307 was 
ordered favorably reported to the House by a voice vote. No 
amendments were offered during full Committee consideration of 
H.R. 307.

                            Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list the record votes 
on the motion to report legislation and amendments thereto. 
There were no recorded votes taken during consideration or 
ordering H.R. 307 reported to the House.

                      Committee Oversight Findings

    Regarding clause 3(c)(1) of rule XIII of the Rules of the 
House of Representatives, the oversight findings of the 
Committee are reflected in this report.

         Statement of General Performance Goals and Objectives

    H.R. 307 states that the Director of the National 
Institutes of Health (NIH) may develop mechanisms to coordinate 
the paralysis research and rehabilitation activities of the 
Institutes and Centers of NIH in order to further advance such 
activities and avoid duplication of activities. H.R. 307 
permits the Director of NIH to make awards of grants to public 
or private entities to pay all or part of the cost of planning, 
establishing, improving, and providing basic operating support 
for consortia in paralysis research and requires that the 
Director shall designate each consortium, funded through such 
grants, as a Christopher and Dana Reeve Paralysis Research 
Consortium. This legislation permits the Secretary of Health 
and Human Services (HHS) to study the 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 individuals with such 
conditions. H.R. 307 permits the Secretary to award grants for 
activities related to paralysis, including to: (1) establish 
paralysis registries, and (2) disseminate information to the 
public.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    In compliance with clause 3(c)(2) of rule XIII of the Rules 
of the House of Representatives, the Committee finds that H.R. 
307 would result in no new or increased budget authority, 
entitlement authority, or tax expenditures.

                  Earmarks and Tax and Tariff Benefits

    In compliance with clause 9 of rule XXI of the Rules of the 
House of Representatives, H.R. 307 does not contain any 
congressional earmarks, limited tax benefits, or limited tariff 
benefits as defined in clause 9(d), 9(e), or 9(f) of rule XXI.

                        Committee Cost Estimate

    The Committee adopts as its own the cost estimate on H.R. 
307 prepared by the Director of the Congressional Budget Office 
pursuant to section 402 of the Congressional Budget Act of 
1974.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII of the Rules of the 
House of Representatives, the following is the cost estimate on 
H.R. 307 provided by the Congressional Budget Office pursuant 
to section 402 of the Congressional Budget Act of 1974:

H.R. 307--Christopher and Dana Reeve Paralysis Act

    Summary: H.R. 307 would authorize the appropriation of $25 
million a year for fiscal years 2010 through 2013 for the 
Secretary of Health and Human Services (HHS) to undertake 
activities to improve the quality of life of those with 
paralysis and to establish a population-based database to be 
used for paralysis research. The bill also would authorize the 
Director of the National Institutes of Health (NIH) to award 
grants to consortia focused on paralysis research and for 
multicenter networks focused on paralysis rehabilitation.
    CBO estimates that implementing the bill would cost $10 
million in 2010 and $95 million over the 2010-2014 period, 
assuming the appropriation of the authorized amounts. Enacting 
H.R. 307 would not affect direct spending or revenues.
    The bill contains no intergovernmental or private-sector 
mandates as defined in the Unfunded Mandates Reform Act (UMRA); 
any costs to state and local governments would be incurred 
voluntarily.
    Estimated cost to the Federal Government: The estimated 
budgetary impact of H.R. 307 is shown in the following table. 
The costs of this legislation fall within budget function 550 
(health).

----------------------------------------------------------------------------------------------------------------
                                                               By fiscal year, in millions of dollars--
                                                     -----------------------------------------------------------
                                                                                                          2010-
                                                        2010      2011      2012      2013      2014      2014
----------------------------------------------------------------------------------------------------------------
                                  CHANGES IN SPENDING SUBJECT TO APPROPRIATION

Authorization Level.................................        25        25        25        25         0       100
Estimated Outlays...................................        10        10        25        25        15        95
----------------------------------------------------------------------------------------------------------------

    Basis of estimate: For this estimate, CBO assumes that H.R. 
307 will be enacted near the start of fiscal year 2010 and that 
the authorized amounts will be appropriated for each year.

              HHS GRANTS FOR PARALYSIS-RELATED ACTIVITIES

    H.R. 307 would authorize the appropriation of $25 million 
for each of fiscal years 2010 through 2013 for the Secretary of 
Health and Human Services to conduct studies and undertake 
activities to improve the quality of life with persons with 
paralysis, and to make grants to state and local agencies to 
establish a research database on paralysis. Based on historical 
spending patterns for similar activities, CBO estimates that 
implementing those programs would cost $10 million in 2010 and 
$95 million over the 2009-2014 period.

                   NIH SUPPORT FOR RESEARCH CONSORTIA

    H.R. 307 would authorize the Director of the NIH to award 
grants to public or private organizations for the cost of 
planning, establishing, improving, and providing basic 
operating support for consortia focused on paralysis research. 
Each consortium, which could involve a single institution or 
multiple institutions, would be designated as a Christopher and 
Dana Reeve Paralysis Research Consortium.
    The bill also would authorize the Director of the NIH to 
award grants to public or private entities for planning, 
establishing, improving, and providing basic operating support 
for multicenter networks that would collaborate to design 
protocols for clinical intervention.
    According to officials at the NIH, the institutes are 
currently funding such activities. In fiscal year 2008, the NIH 
spent $296 million on stroke research, $85 million on traumatic 
brain injury research, and $66 million on spinal cord injury 
research. Among the efforts funded with this money are several 
research networks. For example, the Neurological Emergency 
Treatment Trials network funded through the National Institutes 
of Neurological Disorders and Stroke seeks to engage providers 
on the front lines in emergency rooms to carry out multicenter 
clinical trials to understand neurological emergencies. The 
National Institute for Child Health and Human Development 
(NICHD) funds several research networks. For example, to date, 
NICHD has funded six grants to build research infrastructure in 
the field of medical rehabilitation.
    If H.R. 307 were enacted, the most significant change at 
NIH would likely be the naming of research consortia after 
Christopher and Dana Reeve. CBO estimates that the NIH 
provisions of H.R. 307 would not have any significant cost.
    Intergovernmental and private-sector impact: H.R. 307 
contains no intergovernmental or private-sector mandates as 
defined in UMRA. Grants and research activities authorized in 
the bill for the study and treatment of paralysis and other 
physical disabilities would benefit state and local 
governments. Any costs to those governments to comply with 
grant conditions would be incurred voluntarily.
    Estimate prepared by: Federal costs: Jamease Kowalczyk; 
Impact on state, local, and tribal governments: Lisa Ramirez-
Branum; Impact on private sector: Patrick Bernhardt.
    Estimate approved by: Peter H. Fontaine, Assistant Director 
for Budget Analysis.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of federal 
mandates regarding H.R. 307 prepared by the Director of the 
Congressional Budget Office pursuant to section 423 of the 
Unfunded Mandates Reform Act.

                      Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act were created by H.R. 307.

                   Constitutional Authority Statement

    Pursuant to clause 3(d)(1) of rule XIII of the Rules of the 
House of Representatives, the Committee finds that the 
constitutional authority for H.R. 307 is provided in the 
provisions of Article I, section 8, clause 1, that relate to 
expending funds to provide for the general welfare of the 
United States.

                  Applicability to Legislative Branch

    The Committee finds that this legislation does not relate 
to the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act of 1995.

             Section-by-Section Analysis of the Legislation

Section 1. Short title

    Section 1 establishes the short title of the Act as the 
``Christopher and Dana Reeve Paralysis Act''.

Section 2. Table of contents

    Section 2 contains the table of contents.

                      TITLE I--PARALYSIS RESEARCH

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

    Section 101 states that the Director of NIH may develop 
mechanisms to coordinate the paralysis research and 
rehabilitation activities of the Institutes and Centers of NIH 
in order to further advance such activities and avoid 
duplication of activities. The NIH Director may also award 
grants to public or private entities to pay all, or part of, 
the cost of planning, establishing, improving, and providing 
basic operating support for consortia in paralysis research. 
Each consortium funded under these grants will be designated as 
part of the Christopher and Dana Reeve Paralysis Research 
Consortium. The Director of NIH may provide for the 
coordination of information among consortia and a mechanism to 
educate and disseminate information on the existing and planned 
programs and research activities of NIH with respect to 
paralysis and through which NIH can receive comments from the 
public regarding such programs and activities.

          TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE

Section 201. Activities of the National Institutes of Health with 
        respect to research with implications for enhancing daily 
        function for persons with paralysis.

    Section 201 states that the Director of NIH may make awards 
of grants to public or 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. A multicenter network of clinical 
sites funded through this legislation may replicate the 
findings of network members or other researchers for scientific 
and translation purposes and may focus on areas of key 
scientific concern, including: (1) improving functional 
mobility; (2) promoting behavioral adaptation to functional 
losses, especially to prevent secondary complications; (3) 
assessing the efficacy and outcomes of medical rehabilitation 
therapies and practices and assisting technologies; (4) 
developing improved assistive technology to improve function 
and independence; and (5) understanding whole body system 
responses to physical impairments, disabilities, and societal 
and functional limitations. The Director of NIH may 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.

  TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND 
                      OTHER PHYSICAL DISABILITIES

Section 301. Programs to improve quality of life for persons with 
        paralysis and other physical disabilities.

    Section 301 states that the Secretary of HHS 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. The grants or contracts may be 
used to fund activities such as: (1) 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; 
(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) collaboration with other centers and national 
voluntary health agencies to establish a population-based 
database that may be used for longitudinal and other research 
on paralysis and other disabling conditions; and (4) the 
replication and translation of best practices and the sharing 
of information across states, as well as 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. For the purpose of carrying out Title 
III, there are authorized to be appropriated $25,000,000 for 
each of the fiscal years 2010 through 2013.

                                  

```