[Congressional Record Volume 150, Number 132 (Wednesday, November 17, 2004)]
[Senate]
[Page S11419]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
RESEARCH REVIEW ACT
Mr. REID. Mr. President, last month we lost a great American,
Christopher Reeve. Since a riding accident left him paralyzed from the
neck down, Christopher Reeve has been an inspiration to all Americans,
particularly to those living with paralysis as a result of spinal cord
injury.
In the years following his accident, Christopher Reeve made
tremendous progress. He regained sensation and movement in some parts
of his body and was able to breathe for periods of time without a
ventilator. Watching Christopher Reeve achieve these milestones gave
hope to individuals with spinal cord injuries, their families,
researchers and just about everyone.
We lost Christopher Reeve, but we cannot lose sight of his dream for
a cure. We must do everything we can to ensure that Federal researchers
have the tools they need to further advance paralysis research, and to
ultimately find a cure.
I am pleased that today we are honoring the legacy of Christopher
Reeve by passing the Research Review Act. This legislation includes a
provision that will advance the goals of the Christopher Reeve
Paralysis Act.
There is no stronger voice in the Senate for individuals with
disabilities than Senator Tom Harkin. And for the last several years,
Senator Harkin has worked with the Christopher Reeve Paralysis
Foundation to pass legislation that would further advance the science
needed to promote spinal regeneration and build quality-of-life
programs for individuals with paralysis and other mobility impairments.
The Research Review Act supports the intent of the Christopher Reeve
Paralysis Act by directing the National Institutes of Health to draft a
report on ways they have encouraged the use of multi-disciplinary
research teams to advance treatments, develop new therapies, and
collaborate on clinical trials with respect to spinal cord injury and
paralysis research.
The Research Review Act is an important step in the right direction,
but we must do everything we can to pass and fund the Christopher Reeve
Paralysis Act during the next session of Congress.
The Research Review Act also includes important provisions related to
inflammatory bowel disease. I am the proud sponsor of legislation in
the Senate known as the ``IBD Act'' which is designed to improve the
quality of life for patients suffering from inflammatory bowel disease.
I am pleased that 36 Members of the Senate, including Senator Cochran,
have cosponsored this bipartisan legislation.
Inflammatory bowel disease, which includes both Crohn's disease and
ulcerative colitis, is a chronic disorder of the gastrointestinal tract
which afflicts approximately 1 million Americans, 100,000 or 10 percent
of whom are children under the age of 18. IBD can cause severe
abdominal pain, fever, and intestinal bleeding. Complications related
to the disease include: Arthritis, osteoporosis, anemia, liver disease,
and colon cancer. Inflammatory bowel disease represents a major cause
of morbidity from digestive illness, and although it is not fatal, IBD
can be devastating.
I am pleased that the Research Review Act contains three important
provisions related to inflammatory bowel disease. The first provision
directs the Centers for Disease Control and Prevention to report to the
Congress on the status of its inflammatory bowel disease epidemiology
study. This much needed study is being conducted by CDC through
financial support provided by the Crohn's and Colitis Foundation of
America (CCFA). Over the past 2 years, CCFA has provided the CDC with
$750,000 to establish the epidemiology project. I am pleased that the
Senate Labor, Health and Human Services and Education Appropriations
Subcommittee has provided $800,000 for Fiscal Year 2005 to continue
this important study.
The second provision of interest to the IBD community directs the
Government Accountability Office to conduct a study on the coverage
standards of Medicare/Medicaid for the therapies that IBD patients need
to manage their disease. If there are gaps in coverage that negatively
impact the health and quality of life of IBD patients on Medicare or
Medicaid, we need to know about them, and take steps to address the
problem.
The bill provides for a GAO study on the challenges that IBD patients
encounter when applying for Social Security Disability. This study will
include recommendations for improving the application process for IBD
patients. This is critical to our effort to ensure that every patient
who deserves disability coverage, receives it.
I am pleased to inform my colleagues that this is the first piece of
authorizing legislation to pass the United States Congress that
addresses inflammatory bowel disease. I would like to extend my
appreciation to the Crohn's and Colitis Foundation of America for their
tremendous advocacy in support of this bill and the ``IBD Act'' in the
108th Congress. Over the past 2 years, tens of thousands of IBD
patients have made their voice heard on Capitol Hill. I am pleased that
a disease that for so long has been in the shadows of our society is
starting to receive much needed attention and support. We would not be
here today if it wasn't for the commitment of these patients and their
family members.
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