[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.