89–009

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

REPORT

[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.

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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

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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.

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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.

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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.

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