[Congressional Record Volume 153, Number 155 (Monday, October 15, 2007)]
[House]
[Pages H11516-H11519]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
{time} 1630
CHRISTOPHER AND DANA REEVE PARALYSIS ACT
Ms. BALDWIN. Madam Speaker, I move to suspend the rules and pass 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, as
amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 1727
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
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.
[[Page H11517]]
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.
The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from
Wisconsin (Ms. Baldwin) and the gentleman from New York (Mr. Fossella)
each will control 20 minutes.
The Chair recognizes the gentlewoman from Wisconsin.
General Leave
Ms. BALDWIN. Madam Speaker, I ask unanimous consent that all Members
have 5 legislative days within which to revise and extend their remarks
and include extraneous material on the bill under consideration.
The SPEAKER pro tempore. Is there objection to the request of the
gentlewoman from Wisconsin?
There was no objection.
Ms. BALDWIN. Madam Speaker, I yield myself such time as I may
consume.
Madam Speaker, I rise today in support of H.R. 1727, the Christopher
and Dana Reeve Paralysis Act. I am honored to have known Christopher
and Dana Reeve, and it is fitting that we are considering this bill
today just after the 3-year anniversary of Christopher's death.
As we know, sometimes hardships and painful experiences are the
starting point for an incredible advocacy, and this was certainly the
case with Christopher and Dana Reeve. In turn, the Christopher and Dana
Reeve Paralysis Act reflects our desire to carry out their work and
improve the lives of, and hasten better treatments and cures for,
people living with paralysis.
Madam Speaker, as many of my colleagues may be aware, millions of
[[Page H11518]]
Americans live with paralysis. Two million Americans live with
paralysis of the extremities; a quarter million Americans live with
spinal cord injuries; 4 million Americans live with the effects of
stroke; 250,000 to 350,000 Americans have been diagnosed with some form
of multiple sclerosis; half a million children and adults in the U.S.
have been diagnosed with cerebral palsy; and 30,000 Americans, as we
have just heard, live with ALS, also known as Lou Gehrig's disease.
This legislation is multifaceted and seeks to address several aspects
of paralysis research and quality-of-life issues. The bill expands
research on paralysis at the NIH by encouraging collaborative research
to connect scientists doing similar work and enhanced understanding and
speed discovery of better treatment and cures. The bill also encourages
research to enhance the daily function of people with paralysis,
including improving their functional mobility, assessing the efficacy
and outcomes of medical rehabilitation therapies, and developing
improved assistive technology to improve function and independence.
Lastly, the bill seeks to improve the quality of life and health of
persons with paralysis and other physical disabilities by supporting
programs to disseminate information involving care and rehabilitation
options. It also coordinates best practices designed to support and
advance quality-of-life programs for persons living with paralysis and
other physical disabilities.
Madam Speaker, Christopher and Dana Reeve used their visibility to
work on behalf of families in all parts of this country who face the
challenges of paralysis and impaired mobility. I have been honored to
carry on their work and am honored to work on this legislation with
Congresswoman Bono, Congressman Langevin, and Congressman Bilirakis. I
am also thankful to have had the opportunity to work with the
Christopher and Dana Reeve Foundation and the thousands of paralysis
advocates who have worked for the passage of this bill.
Madam Speaker, I urge all of my colleagues to join me in supporting
the Christopher and Dana Reeve Paralysis Act.
Madam Speaker, I reserve the balance of my time.
Mr. FOSSELLA. Madam Speaker, I yield myself such time as I may
consume.
Madam Speaker, I rise today as well in support of H.R. 1727, the
Christopher and Dana Reeve Paralysis Act, introduced by Representatives
Baldwin, Bono, and Bilirakis. My colleague from Wisconsin stated very
eloquently the statistics and the justification for this act, and it is
long overdo. As was mentioned, the legislation would authorize the
Director of the National Institutes of Health to coordinate paralysis
research through the NIH Institutes and Centers.
Research would be focused on basic, translational, and multicenter
networks of clinical sites focused on designing clinical rehabilitation
protocols for one or more forms of paralysis. Such paralysis research
would include paralysis from the central nervous system trauma,
disorders, stroke, or any combination of such conditions. Additionally,
the legislation would authorize the Secretary of Health and Human
Services to award grants for activities related to paralysis, including
grants to establish paralysis registries and disseminate information to
the public.
Madam Speaker, we have seen over the years how the Reeves served as
strong advocates for the paralysis community, meeting with a wide
variety of colleagues in the House and the Senate over the last several
years. Their dignified presence in Washington will be greatly missed. I
believe that through legislative initiatives such as this one the work
done by the Christopher and Dana Reeve Foundation will continue that
work that was left unfinished, and will be done so in a respectful
manner.
As the population continues to grow and to age, I think more and more
of society will be confronted with the likes of paralysis. It is our
job, and I think responsibility, to partner with the private sector to
bring awareness, funding, and education to ensure that as few people as
possible are brought down by this illness.
Madam Speaker, I reserve the balance of my time.
Ms. BALDWIN. Madam Speaker, I have no further Members seeking time,
and continue to reserve the balance of my time.
Mr. FOSSELLA. Madam Speaker, it is my pleasure and honor to yield 3
minutes to the gentleman from Florida (Mr. Bilirakis), a leader in this
cause and a sponsor of this legislation.
Mr. BILIRAKIS. Madam Speaker, I rise today in support of H.R. 1727,
the Christopher and Dana Reeve Paralysis Act. Millions of Americans
suffer from paralysis and mobility impairment. They struggle each and
every day to perform even the most basic of tasks that most of us take
for granted. The impact this impairment has on the lives and the lives
of those who love them and care for them is staggering. As one who has
struggled with hearing and vision problems nearly my entire life, I
know how difficult any physical impairment can be, both physically and
emotionally; but I cannot imagine what people with severe paralysis go
through and their constant struggle to maintain hope that they one day
will walk or move again.
Madam Speaker, I am very proud to be an original cosponsor of this
bill, which will encourage collaborative research in paralysis and
hasten the discovery of treatments and potential cures to improve the
lives of people with paralysis. I am especially pleased that this bill
is modeled after legislation I introduced at the beginning of this
Congress. My bill, the language of which this bill includes, also has
provisions to utilize VA facilities to improve paralysis research and
better track the work that is being done in this area within the
world's largest system of hospitals.
Madam Speaker, I want to thank Congresswoman Tammy Baldwin for
sponsoring this bill, and also Energy and Commerce Committee Chairman
John Dingell and Ranking Member Joe Barton for moving it through their
committee. I also want to give special thanks to my father, former
Congressman Mike Bilirakis, who first introduced this bill several
years ago after meeting the extraordinary men and women for whom this
bill was named. His persistence and determination helped build the
necessary support to get us where we are today.
Although I never had the honor of meeting Christopher or Dana Reeve
personally, my father has shared with me their strength, dignity, and
courage in dealing with what only people similarly situated can fully
understand. They pushed to the national forefront the issue of the need
for better research into paralysis and greater emphasis on
rehabilitation. I wish they were here to share this moment with us
today, though I am sure they are both smiling down on our efforts here
today.
Madam Speaker, I believe we can and must do more for those suffering
from paralysis and mobility impairment. I urge all my colleagues to
help take a significant step forward in this area by supporting this
bill today.
Ms. BALDWIN. Madam Speaker, I continue to reserve the balance of my
time.
Mr. FOSSELLA. Madam Speaker, let me just once again thank Mr.
Bilirakis and, of course, his father for spearheading this when he was
in the House, and Ms. Baldwin and Mrs. Bono for bringing this to the
floor. We know how paralysis, especially sudden paralysis, can damage
one's life and that of their family, and it becomes a lifelong
commitment. Once again, I think Congress has a real fundamental
responsibility to ensure we can bring as much peace and peace of mind
to those families. With that, I urge the adoption of this bill.
Madam Speaker, I yield back the balance of my time.
Ms. BALDWIN. Madam Speaker, in closing, as we remember Christopher
Reeve just after the third anniversary of his passing, we honor him by
having the House consider today and pass one of the truly first
comprehensive bills focused on paralysis research and care for those
who are paralyzed. I urge Members to strongly support this bill.
Ms. SUTTON. Madam Speaker, I rise today in strong support of H.R.
1727, the Christopher and Dana Reeve Quality of Life for Persons with
Paralysis Act. And as I express my support for this legislation today,
I would like to recognize an outstanding organization in my district,
Linking Employment, Abilities, and Potential, or LEAP.
LEAP provides hope and empowerment for tens of thousands of people
with disabilities and their families throughout Northeast Ohio.
[[Page H11519]]
Through legislation such as the Christopher and Dana Reeve Paralysis
Act, Congress sends a message about people with disabilities--that they
matter, that they can and do make valuable contributions to society.
That is a message that LEAP and so many disability rights advocates
send every day.
LEAP is deeply committed to empowering people with disabilities in
the workplace through specialized skill development programs, at home
through independent living training, in the medical system through
access to the best medical care, and in so many other aspects of
society. LEAP's Disability Employment Training Program, in particular,
aligns with the goals of Christopher and Dana Reeve, who fought so hard
for integration and acceptance for those with disabilities in our
communities. LEAP has an 80 percent success rate in employment training
and placement and has a tremendous impact on the community, recognizing
the many talents of people with disabilities and the potential to be
productive citizens.
Once again, I rise to express my support for H.R. 1727, and to honor
Linking Employment, Abilities, and Potential.
Ms. BALDWIN. Madam Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentlewoman from Wisconsin (Ms. Baldwin) that the House suspend the
rules and pass the bill, H.R. 1727, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
____________________