The United States House of Representative
Oct 15, 2007
Section 26
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In This Section...
 | Rep. Baldwin [D-WI2]: 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... |
 | Rep. Fossella [R-NY13]: 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... |
 | Rep. Bilirakis [R-FL9]: 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.... |
 | Rep. Sutton [D-OH13]: 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... |
Record Text
CHRISTOPHER AND DANA REEVE PARALYSIS ACT -- (House of Representatives - October 15, 2007)<p><center><pre>[Page: H11516]
Rep. Tammy Baldwin [D-WI2]:
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:
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,<p> SECTION 1. SHORT TITLE.<p> This Act may be cited as the "Christopher and Dana Reeve Paralysis Act".<p> SEC. 2. TABLE OF CONTENTS.<p> Sec..1..Short title.<p> Sec..2..Table of contents.
Sec..101..Activities of the National Institutes of Health with respect to research on paralysis.
Sec..201..Activities of the National Institutes of Health with respect to research with implications for enhancing daily function for persons with paralysis.
Sec..301..Programs to improve quality of life for persons with paralysis and other physical disabilities.
SEC. 101. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON PARALYSIS.<p> (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.<p> (b) Christopher and Dana Reeve Paralysis Research Consortia.--<p> (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.<p> (2) RESEARCH.--Each consortium under paragraph (1)--<p> (A) may conduct basic, translational, and clinical paralysis research;<p> (B) may focus on advancing treatments and developing therapies in paralysis research;<p> (C) may focus on one or more forms of paralysis that result from central nervous system trauma or stroke;<p> (D) may facilitate and enhance the dissemination of clinical and scientific findings; and<p> (E) may replicate the findings of consortia members or other researchers for scientific and translational purposes.<p> (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.<p> (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.<p> (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.
(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.<p> (b) Research.--A multicenter network of clinical sites funded through this section may--<p> (1) focus on areas of key scientific concern, including--<p> (A) improving functional mobility;<p> (B) promoting behavioral adaptation to functional losses, especially to prevent secondary complications;<p> (C) assessing the efficacy and outcomes of medical rehabilitation therapies and practices and assisting technologies;<p> (D) developing improved assistive technology to improve function and independence; and<p> (E) understanding whole body system responses to physical impairments, disabilities, and societal and functional limitations; and<p> (2) replicate the findings of network members or other researchers for scientific and translation purposes.<p> (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.
SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND OTHER PHYSICAL DISABILITIES.<p> (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.<p> (b) Certain Activities.--Activities under subsection (a) may include--<p> (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;<p> (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;<p> (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<p> (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--<p> (A) caregiver education;<p> (B) promoting proper nutrition, increasing physical activity, and reducing tobacco use;<p> (C) education and awareness programs for health care providers;<p> (D) prevention of secondary complications;<p> (E) home- and community-based interventions;<p> (F) coordinating services and removing barriers that prevent full participation and integration into the community; and<p> (G) recognizing the unique needs of underserved populations.<p> (c) Grants.--The Secretary may award grants in accordance with the following:<p> (1) To State and local health and disability agencies for the purpose of--<p> (A) establishing a population-based database that may be used for longitudinal and other research on paralysis and other disabling conditions;<p> (B) developing comprehensive paralysis and other physical disability action plans and activities focused on the items listed in subsection (b)(4);<p> (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;<p> (D) coordinating paralysis and physical disability activities with existing State-based disability and health programs;<p> (E) providing education and training opportunities and programs for health professionals and allied caregivers; and<p> (F) developing, testing, evaluating, and replicating effective intervention programs to maintain or improve health and quality of life.<p> (2) To private health and disability organizations for the purpose of--<p> (A) disseminating information to the public;<p> (B) improving access to services for persons living with paralysis and other physical disabilities and their caregivers;<p> (C) testing model intervention programs to improve health and quality of life; and<p> (D) coordinating existing services with State-based disability and health programs.<p> (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.<p>
Chair: Pursuant to the rule, the gentlewoman from Wisconsin (Ms. Baldwin) and the gentleman from New York (Mr. Fossella) each will control 20 minutes.
Chair: The Chair recognizes the gentlewoman from Wisconsin.
Rep. Tammy Baldwin [D-WI2]:
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.
Chair: Is there objection to the request of the gentlewoman from Wisconsin?
Chair: There was no objection.
Rep. Tammy Baldwin [D-WI2]:
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.
Rep. Vito Fossella [R-NY13]:
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.
Rep. Tammy Baldwin [D-WI2]:
Madam Speaker, I have no further Members seeking time, and continue to reserve the balance of my time.
Rep. Vito Fossella [R-NY13]:
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.
Rep. Gus Bilirakis [R-FL9]:
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.
Rep. Tammy Baldwin [D-WI2]: Madam Speaker, I continue to reserve the balance of my time.
Rep. Vito Fossella [R-NY13]:
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.
Rep. Tammy Baldwin [D-WI2]:
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.
Rep. Betty Sutton [D-OH13]:
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.
Rep. Tammy Baldwin [D-WI2]: Madam Speaker, I yield back the balance of my time.
Chair: 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.
Chair: The question was taken; and (two-thirds being in the affirmative) the rules were suspended and the bill, as amended, was passed.
Chair: A motion to reconsider was laid on the table.
