[House Report 107-181]
[From the U.S. Government Publishing Office]



107th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 1st Session                                                    107-181

======================================================================



 
   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.

                                  
