[Congressional Record (Bound Edition), Volume 153 (2007), Part 19]
[House]
[Pages 27147-27150]
[From the U.S. 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''.

[[Page 27148]]



     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.

  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.

[[Page 27149]]

  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 
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.

[[Page 27150]]


  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.
  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.

                          ____________________