[House Report 107-181]
[From the U.S. Government Publishing Office]
107th Congress Report
HOUSE OF REPRESENTATIVES
1st Session 107-181
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EXPRESSING THE SENSE OF THE CONGRESS REGARDING TUBEROUS SCLEROSIS
_______
August 1, 2001.--Referred to the House Calendar and ordered to be
printed
_______
Mr. Tauzin, from the Committee on Energy and Commerce, submitted the
following
R E P O R T
[To accompany H. Con. Res. 25]
[Including cost estimate of the Congressional Budget Office]
The Committee on Energy and Commerce, to whom was referred
the concurrent resolution (H. Con. Res. 25) expressing the
sense of the Congress regarding tuberous sclerosis, having
considered the same, report favorably thereon with an amendment
and recommend that the concurrent resolution as amended be
agreed to.
CONTENTS
Page
Amendment........................................................ 1
Purpose and Summary.............................................. 2
Background and Need for Legislation.............................. 2
Hearings......................................................... 3
Committee Consideration.......................................... 3
Committee Votes.................................................. 3
Committee Oversight Findings..................................... 3
Statement of General Performance Goals and Objectives............ 3
New Budget Authority, Entitlement Authority, and Tax Expenditures 3
Committee Cost Estimate.......................................... 3
Congressional Budget Office Estimate............................. 4
Federal Mandates Statement....................................... 4
Advisory Committee Statement..................................... 4
Constitutional Authority Statement............................... 5
Applicability to Legislative Branch.............................. 5
Section-by-Section Analysis of the Legislation................... 5
Changes in Existing Law Made by the Bill, as Reported............ 5
amendment
The amendment strikes the preamble and inserts a new preamble
which appears in italic type in the reported concurrent
resolution.
The following shows the preamble and the subsequent
provisions of the reported concurrent resolution:
Whereas at least two children born each day will be affected with tuberous
sclerosis;
Whereas nearly one million people worldwide are known to have tuberous
sclerosis;
Whereas tuberous sclerosis affects all races and ethnic groups equally;
Whereas tuberous sclerosis is caused by either an inherited autosomal
disorder or by a spontaneous genetic mutation;
Whereas when tuberous sclerosis is genetically transmitted as an autosomal
dominant disorder, a child with a parent with the gene will have a 50-
percent chance of inheriting the disease;
Whereas two-thirds of the cases of tuberous sclerosis are believed to be a
result of spontaneous mutation, although the cause of such mutations is a
mystery;
Whereas diagnosis takes an average of 90 days with consultation of at least
three specialists;
Whereas tuberous sclerosis frequently goes undiagnosed because of the
obscurity of the disease and the mild form the symptoms may take; and
Whereas the Congress as an institution, and Members of Congress as
individuals, are in unique positions to help raise public awareness about
the need for increased funding for research, detection, and treatment of
tuberous sclerosis and to support the fight against tuberous sclerosis:
Now, therefore, be it
Resolved by the House of Representatives (the Senate concurring),
That it is the sense of the Congress that--
(1) all Americans should take an active role in the fight
against tuberous sclerosis by all means available to them,
including early and complete clinical testing and investigating
family histories;
(2) the role played by national and community organizations
and health care providers in promoting awareness of the
importance of early diagnosis, testing, and ongoing screening
should be recognized and applauded;
(3) the Federal Government has a responsibility to--
(A) endeavor to raise awareness about the importance
of the early detection of, and proper treatment for,
tuberous sclerosis;
(B) increase funding for research so that the causes
of, and improved treatment for, tuberous sclerosis may
be discovered; and
(C) continue to consider ways to improve access to,
and the quality of, health care services for detecting
and treating tuberous sclerosis; and
(4) the Director of the National Institutes of Health should
take a leadership role in the fight against tuberous sclerosis
by acting with appropriate offices within the National
Institutes of Health to provide to the Congress a five-year
research plan for tuberous sclerosis.
purpose and summary
H. Con. Res. 25 encourages the Federal government to
increase public awareness of tuberous sclerosis.
background and need for legislation
Tuberous sclerosis complex (TSC) is a genetic disorder
characterized by seizures and tumor growth in vital organs such
as the brain, heart, kidneys, lungs, and skin. Individuals with
tuberous sclerosis commonly begin having seizures during the
first year of life, and conventional epilepsy therapies often
do not control the seizure activity in infants, children or
adults. Seizures, as well as brain tumors, contribute to
cognitive impairment. As a result, a majority of those
afflicted with tuberous sclerosis experience some form of
learning disability and behavioral problem.
There are at least one million people worldwide who are
known to have tuberous sclerosis. The Committee endeavors to
raise awareness about the importance of the early detection of
and proper treatment for tuberous sclerosis. Further, the
Committee believes the resources of the Federal government's
health and research institutes, through a coordinated effort,
can accelerate the understanding of the biological mechanisms
causing tuberous sclerosis. Working in partnership with other
research initiatives, this Nation can help lessen the long-term
impact of this devastating disease.
H. Con. Res. 25 takes an important step in the fight
against tuberous sclerosis.
hearings
The Subcommittee on Health held a hearing entitled,
``Advancing the Health of the American People: Addressing
Various Public Health Needs'' on June 27, 2001. The
Subcommittee heard testimony on H. Con. Res. 25 at the hearing.
The witness testifying on the bill was Mr. Michael Coburn,
President and CEO, Tuberous Sclerosis Alliance.
committee consideration
On Wednesday, July 11, 2001, the Subcommittee on Health met
in an open markup session and approved H. Con. Res. 25 for Full
Committee consideration, as amended, by voice vote, a quorum
being present. On Wednesday, July 18, 2001, the Full Committee
met in open markup session and ordered H. Con. Res. 25
favorably reported to the House, as amended, by unanimous
consent, a quorum being present.
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 in connection with ordering H.
Con. Res. 25 reported. A motion by Mr. Tauzin to order H. Con.
Res. 25 reported to the House, as amended, was agreed to by
unanimous consent.
committee oversight findings
Pursuant to clause 3(c)(1) of rule XIII of the Rules of the
House of Representatives, the Committee held a legislative
hearing and made findings that are reflected in this report.
statement of general performance goals and objectives
The goal of H. Con. Res. 25 is to encourage all Americans
and the Federal government to take an active role in the fight
against tuberous sclerosis.
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.
Con. Res. 25, a concurrent resolution expressing the sense of
the Congress regarding tuberous sclerosis, would result in no
new or increased budget authority, entitlement authority, or
tax expenditures or revenues.
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, July 30, 2001.
Hon. W.J. ``Billy'' Tauzin,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
Dear Mr. Chairman: The Congressional Budget Office has
prepared the enclosed cost estimates for the following
Concurrent Resolutions approved by the Committee on Energy and
Commerce:
--H. Con. Res. 25, expressing the sense of the Congress
regarding tuberous sclerosis.
--H. Con. Res. 36, urging increased federal funding for
juvenile (Type I) diabetes research.
--H. Con. Res. 61, expressing support for a National Reflex
Sympathetic Dystrophy (RSD) Awareness Month.
If you wish further details on these estimates, we will be
pleased to provide them. The CBO staff contact is Charles
Betley.
Sincerely,
Barry B. Anderson
(For Dan L. Crippen, Director).
Enclosure.
H. Con. Res. 25--Expressing the sense of the Congress regarding
tuberous sclerosis
H. Con. Res. 25 would express the support of the Congress
for efforts to encourage early and complete clinical testing
for tuberous sclerosis, to raise awareness of the needs for
clinical testing, and to increase research to improve the
detection and treatment of tuberous sclerosis. The resolution
also would urge the Director of the National Institutes of
Health to develop a five-year research plan for improving
detection and treatment of tuberous sclerosis. CBO estimates
that passing H. Con. Res. 25 woud result in no significant cost
to the federal government. The resolution would not affect
direct spending or receipts; therefore, pay-as-you-go
procedures would not apply.
The CBO staff contact is Charles Betley. This estimate was
approved by Peter H. Fontaine, Deputy Assistant Director for
Budget Analysis.
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
Article I, section 8, clause 3, which grants Congress the power
to regulate commerce with foreign nations, among the several
States, and with the Indian tribes.
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
H. Con. Res. 25 expresses the sense of the Congress that
the Federal government has a responsibility to raise public
awareness of tuberous sclerosis and educate all Americans about
the importance of the early detection of, and proper treatment
for, tuberous sclerosis. In addition, the resolution urges an
increase in funding for research on tuberous sclerosis.
Finally, H. Con. Res. 25 urges the National Institutes of
Health to take a leadership role and to provide a five-year
research plan in the fight against tuberous sclerosis.
Changes in Existing Law Made by the Bill, as Reported
This legislation does not amend any existing Federal
statute.