IV

107TH CONGRESS

2D SESSION H. CON. RES. 320

Expressing the sense of Congress regarding Scleroderma.

IN THE HOUSE OF REPRESENTATIVES

FEBRUARY 7, 2002

Mr. GUTIERREZ (for himself, Mr. LARSON of Connecticut, Ms. MILLENDERMCDONALD, Mr. HYDE, Ms. BROWN of Florida, Ms. MCKINNEY, Mrs.

MORELLA, Mr. COSTELLO, Ms. SCHAKOWSKY, Mr. RUSH, Mr. OWENS,

Mr. PAYNE, Mr. TOWNS, Mrs. MINK of Hawaii, Ms. NORTON, Mr. HINCHEY, Mr. WYNN, Mr. LEVIN, Ms. PELOSI, Ms. LEE, Mr. FRANK, Mr.

BLAGOJEVICH, Mrs. NAPOLITANO, Mr. REYES, Mr. WAXMAN, Mr. LIPINSKI, and Mr. RODRIGUEZ) submitted the following concurrent resolution;

which was referred to the Committee on Energy and Commerce

CONCURRENT RESOLUTION

Expressing the sense of Congress regarding Scleroderma.

Whereas Scleroderma is a debilitating and potentially fatal

autoimmune disease with a broad range of symptoms

which may be either localized or systemic;

Whereas Scleroderma may attack vital internal organs, including the heart, esophagus, lungs, and kidneys, and

may do so without causing any external symptoms;

Whereas more than 300,000 people in the United States suffer from Scleroderma;

Whereas the symptoms of Scleroderma include hardening and

thickening of the skin, swelling, disfigurement of the
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hands, spasms of blood vessels causing severe discomfort

in the fingers and toes, weight loss, joint pain, difficulty

swallowing, extreme fatigue, and ulcerations on the fingertips which are slow to heal;

Whereas people with advanced Scleroderma may be unable to

perform even the simplest tasks;

Whereas 80 percent of the people suffering from Scleroderma

are women between the ages of 25 and 55;

Whereas Scleroderma is the 5th leading cause of death

among all autoimmune diseases for women who are 65

years old or younger;

Whereas the wide range of symptoms and localized and systemic variations of Scleroderma make it difficult to diagnose;

Whereas the average diagnosis of Scleroderma is made 5

years after the onset of symptoms;

Whereas the cause of Scleroderma is still unknown and there

is no known cure;

Whereas Federal funding for Scleroderma research is less

than for other diseases of similar prevalence; and

Whereas the estimated annual direct and indirect costs of

Scleroderma in the United States are $1,500,000,000:

Now, therefore, be it

1 Resolved by the House of Representatives (the Senate

2 concurring), That it is the sense of Congress that—

3 (1) private organizations and health care pro4 viders should be recognized for their efforts to pro5 mote awareness and research of Scleroderma;
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1 (2) the people of the United States should make

2 themselves aware of the symptoms of Scleroderma

3 and contribute to the fight against Scleroderma;

4 (3) the Federal Government has a responsibility

5 to promote awareness regarding Scleroderma, to

6 adequately fund research projects regarding

7 Scleroderma, and to continue to consider ways to

8 improve the quality of health care services provided

9 for Scleroderma patients, including making prescrip10 tion medication more affordable;

11 (4) the National Institutes of Health should

12 continue to play a leadership role in the fight

13 against Scleroderma by—

14 (A) working more closely with private or15 ganizations and researchers to find a cure for

16 Scleroderma;

17 (B) funding research projects regarding

18 Scleroderma conducted by private organizations

19 and researchers;

20 (C) holding a Scleroderma symposium

21 which would bring together distinguished sci22 entists and clinicians from across the United

23 States to determine the most important prior24 ities in Scleroderma research;
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1 (D) supporting the formation of small

2 workgroups composed of experts from diverse

3 but related scientific fields to study

4 Scleroderma;

5 (E) conducting more genetic, environ6 mental, and clinical research regarding

7 Scleroderma;

8 (F) training more basic and clinical sci9 entists to carry out such research; and

10 (G) providing for better dissemination of

11 the information learned from such research;

12 and

13 (5) the Centers for Disease Control and Preven14 tion should give priority consideration to the estab15 lishment of a national epidemiological study to bet16 ter track the incidence of Scleroderma and to gather

17 information about the disease that could lead to a

18 cure.

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