[DOCID: f:hr378.110]
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110th Congress Report
HOUSE OF REPRESENTATIVES
1st Session 110-378
======================================================================
CHRISTOPHER AND DANA REEVE PARALYSIS ACT
_______
October 15, 2007.--Committed to the Committee of the Whole House on the
State of the Union and ordered to be printed
_______
Mr. Dingell, from the Committee on Energy and Commerce, submitted the
following
R E P O R T
[To accompany H.R. 1727]
[Including cost estimate of the Congressional Budget Office]
The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 1727) 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 with an amendment and recommend
that the bill as amended do pass.
CONTENTS
Page
Amendment........................................................ 2
Purpose and Summary.............................................. 4
Background and Need for Legislation.............................. 4
Hearings......................................................... 5
Committee Consideration.......................................... 5
Committee Votes.................................................. 5
Committee Oversight Findings..................................... 5
Statement of General Performance Goals and Objectives............ 5
New Budget Authority, Entitlement Authority, and Tax Expenditures 6
Earmarks and Tax and Tariff Benefits............................. 6
Committee Cost Estimate.......................................... 6
Congressional Budget Office Estimate............................. 6
Federal Mandates Statement....................................... 8
Advisory Committee Statement..................................... 8
Constitutional Authority Statement............................... 8
Applicability to Legislative Branch.............................. 8
Section-by-Section Analysis of the Legislation................... 9
AMENDMENT
The amendment is as follows:
Strike all after the enacting clause and insert the
following:
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Christopher and Dana Reeve Paralysis
Act''.
SEC. 2. TABLE OF CONTENTS.
Sec. 1. Short title.
Sec. 2. Table of contents.
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.
TITLE I--PARALYSIS RESEARCH
SEC. 101. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT
TO RESEARCH ON PARALYSIS.
(a) Coordination.--The Director of the National Institutes of Health
(referred to in this Act as the ``Director''), pursuant to the general
authority of the Director, may develop mechanisms to coordinate the
paralysis research and rehabilitation activities of the Institutes and
Centers of the National Institutes of Health in order to further
advance such activities and avoid duplication of activities.
(b) Christopher and Dana Reeve Paralysis Research Consortia.--
(1) In general.--The Director may 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. The
Director shall designate each consortium funded through such
grants as a Christopher and Dana Reeve Paralysis Research
Consortium.
(2) Research.--Each consortium under paragraph (1)--
(A) may conduct basic, translational, and clinical
paralysis research;
(B) may focus on advancing treatments and developing
therapies in paralysis research;
(C) may focus on one or more forms of paralysis that
result from central nervous system trauma or stroke;
(D) may facilitate and enhance the dissemination of
clinical and scientific findings; and
(E) may replicate the findings of consortia members
or other researchers for scientific and translational
purposes.
(3) Coordination of consortia; reports.--The Director may, as
appropriate, provide for the coordination of information among
consortia under paragraph (1) and ensure regular communication
among members of the consortia, and may require the periodic
preparation of reports on the activities of the consortia and
the submission of the reports to the Director.
(4) Organization of consortia.--Each consortium under
paragraph (1) may use the facilities of a single lead
institution, or be formed from several cooperating
institutions, meeting such requirements as may be prescribed by
the Director.
(c) Public Input.--The Director may provide for a mechanism to
educate and disseminate information on the existing and planned
programs and research activities of the National Institutes of Health
with respect to paralysis and through which the Director can receive
comments from the public regarding such programs and activities.
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.
(a) In General.--The Director, pursuant to the general authority of
the Director, 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, or any combination of such conditions.
(b) Research.--A multicenter network of clinical sites funded through
this section may--
(1) focus on areas of key scientific concern, including--
(A) improving functional mobility;
(B) promoting behavioral adaptation to functional
losses, especially to prevent secondary complications;
(C) assessing the efficacy and outcomes of medical
rehabilitation therapies and practices and assisting
technologies;
(D) developing improved assistive technology to
improve function and independence; and
(E) understanding whole body system responses to
physical impairments, disabilities, and societal and
functional limitations; and
(2) replicate the findings of network members or other
researchers for scientific and translation purposes.
(c) Coordination of Clinical Trials Networks; Reports.--The Director
may, as appropriate, provide for the coordination of information among
networks funded through this section and ensure regular communication
among members of the networks, and may require the periodic preparation
of reports on the activities of the networks and submission of reports
to the Director.
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.
(a) In General.--The Secretary of Health and Human Services (in this
title referred to as the ``Secretary'') 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.
(b) Certain Activities.--Activities under subsection (a) may
include--
(1) the 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, to be carried out in
coordination with the State-based Disability and Health Program
of the Centers for Disease Control and Prevention;
(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) in collaboration with other centers and national
voluntary health agencies, the establishment of 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 focusing on--
(A) caregiver education;
(B) promoting proper nutrition, increasing physical
activity, and reducing tobacco use;
(C) education and awareness programs for health care
providers;
(D) prevention of secondary complications;
(E) home- and community-based interventions;
(F) coordinating services and removing barriers that
prevent full participation and integration into the
community; and
(G) recognizing the unique needs of underserved
populations.
(c) Grants.--The Secretary may award grants in accordance with the
following:
(1) To State and local health and disability agencies for the
purpose of--
(A) establishing a population-based database that may
be used for longitudinal and other research on
paralysis and other disabling conditions;
(B) developing comprehensive paralysis and other
physical disability action plans and activities focused
on the items listed in subsection (b)(4);
(C) assisting State-based programs in establishing
and implementing partnerships and collaborations that
maximize the input and support of people with paralysis
and other physical disabilities and their constituent
organizations;
(D) coordinating paralysis and physical disability
activities with existing State-based disability and
health programs;
(E) providing education and training opportunities
and programs for health professionals and allied
caregivers; and
(F) developing, testing, evaluating, and replicating
effective intervention programs to maintain or improve
health and quality of life.
(2) To private health and disability organizations for the
purpose of--
(A) disseminating information to the public;
(B) improving access to services for persons living
with paralysis and other physical disabilities and
their caregivers;
(C) testing model intervention programs to improve
health and quality of life; and
(D) coordinating existing services with State-based
disability and health programs.
(d) Coordination of Activities.--The Secretary shall ensure that
activities under this section are coordinated as appropriate by the
agencies of the Department of Health and Human Services.
(e) Authorization of Appropriations.--For the purpose of carrying out
this section, there is authorized to be appropriated $25,000,000 for
each of fiscal years 2008 through 2011.
PURPOSE AND SUMMARY
The purpose of H.R. 1727, 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, and for other purposes.
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 has not held hearings
on the legislation.
COMMITTEE CONSIDERATION
On Thursday, September 27, 2007, the Committee on Energy
and Commerce met in open markup session and ordered H.R. 1727
favorably reported to the House, amended, by a voice vote.
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 record votes taken during consideration or in
ordering reported H.R. 1727 to the House. A motion by Mr.
Dingell to order H.R. 1727 favorably reported to the House,
amended, was agreed to by a voice vote.
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. 1727 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. 1727
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. 1727 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.
1727 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. 1727 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 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
provided by the Congressional Budget Office pursuant to section
402 of the Congressional Budget Act of 1974:
U.S. Congress,
Congressional Budget Office,
Washington, DC, October 15, 2007.
Hon. John D. Dingell,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
Dear Mr. Chairman: The Congressional Budget Office has
prepared the enclosed cost estimate for H.R. 1727, the
Christopher and Dana Reeve Paralysis Act.
If you wish further details on this estimate, we will be
pleased to provide them. The CBO staff contact is Sarah Evans.
Sincerely,
Robert A. Sunshine
(For Peter R. Orszag, Director).
Enclosure.
H.R. 1727--Christopher and Dana Reeve Paralysis Act
Summary: H.R. 1727 would authorize the appropriation of $25
million a year for fiscal years 2008 through 2011 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 for the cost of planning, establishing, improving, and
providing basic operating support 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 2008 and $93 million over the 2008-2012 period,
assuming the appropriation of the authorized amounts. Enacting
H.R. 1727 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. 1727 is shown in the following table.
The costs of this legislation fall within budget function 550
(health).
----------------------------------------------------------------------------------------------------------------
By fiscal year, in millions of dollars--
-------------------------------------------------
2008 2009 2010 2011 2012
----------------------------------------------------------------------------------------------------------------
CHANGES IN SPENDING SUBJECT TO APPROPRIATION
Authorization Level........................................... 25 25 25 25 0
Estimated Outlays............................................. 10 20 24 24 15
----------------------------------------------------------------------------------------------------------------
Basis of estimate: For this estimate, CBO assumes that H.R.
1727 will be enacted near the start of fiscal year 2008 and
that the authorized amounts will be appropriated for each year.
HHS grants for paralysis-related activities
H.R. 1727 would authorize the appropriation of $25 million
for each of fiscal years 2008 through 2011 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 H.R. 1727 would cost $10 million in 2008 and $93
million over the 2008-2012 period.
NIH support for research consortia
H.R. 1727 would explicitly 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 be 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 multi-center 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 2006, the NIH
spent $342 million on stroke research, $85 million on traumatic
brain injury research, and $66 million on spinal cord injury
research. Among the research 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 multi-center
clinical trials to understand neurological emergencies. The
National Institute for Child Health and Human Development
(NICHD) funds several research networks. For example, in fiscal
year 2006, NICHD funded six grants to build research
infrastructure in the field of medical rehabilitation.
If H.R. 1727 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. 1727 would not have any significant cost.
Intergovernmental and private-sector impact: H.R. 1727
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.
Previous CBO estimate: On September 6, 2007, CBO
transmitted an estimate for S. 1183 as reported by the Senate
Committee on Health, Education, Labor and Pensions on August 3,
2007. The two versions of the legislation are similar, and the
estimated costs over five years are the same.
Estimate prepared by: Federal costs: Sarah Evans and Tim
Gronniger; Impact on state, local, and tribal governments: Lisa
Ramirez-Branum; Impact on the private sector: Keisuke Nakagawa.
Estimate approved by: Keith J. Fontenot, Deputy Assistant
Director for Health and Human Resources, Budget Analysis
Division.
FEDERAL MANDATES STATEMENT
The Committee adopts as its own the estimate of Federal
mandates 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 this
legislation.
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 this legislation 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 the 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.
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
Title I of this legislation addresses the 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 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
Title II of this legislation addresses the activities of
NIH 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 (a)
improving functional mobility; (b) promoting behavioral
adaptation to functional losses, especially to prevent
secondary complications; (c) assessing the efficacy and
outcomes of medical rehabilitation therapies and practices and
assisting technologies; (d) developing improved assistive
technology to improve function and independence; and (e)
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
Title III of this legislation focuses on 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) collaborating 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 2008 through 2011.
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