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Subject:
From:
Greta C. de Wolf <[log in to unmask]>
Date:
Mon, 28 Feb 2000 12:50:32 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Office of immune diseases in the national institute of health

There is a bill in our federal congress (HOUSE BILL HR 2573 and SENATE
BILL S1897) to establish an office for auto immune diseases in the
National Institute of Health. The benefit of this is that grants for
research can then be obtained from that office. Furthermore, there will
be a spokesperson for autoimmune diseases in our government and a
coordinator for health care providers.

The problem is that neither Celiac Disease nor Dermatitis Herpetiformis
is mentioned in the bill. If these are not mentioned in the bill, the
office will not be able to include CD or DH in any projects or
discussions.

IT IS OF UTMOST IMPORTANCE that we try to get this changed before the
bill is enacted. Below is a copy of the wording of the bill as it now
stands. Please WRITE YOUR CONGRESSWOMAN OR CONGRESSMAN- BOTH SENATOR AND
REPRESENTATIVE TO GET THIS CORRECTED! Below is a copy of a sample
letter.


THE BILL

NIH Office of Autoimmune Diseases Act of 1999 (Introduced in the House)
HR 2573 IH
106th CONGRESS
1st Session
H. R. 2573
To amend the Public Health Service Act to establish an Office of Autoimmune
Diseases at the National Institutes of Health, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES

July 20, 1999
Mr. WAXMAN (for himself, Mrs. MORELLA, and Mr. BONIOR) introduced the
following bill; which was referred to the Committee on Commerce

A BILL
To amend the Public Health Service Act to establish an Office of Autoimmune
Diseases at the National Institutes of Health, and for other purposes.
Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,


SECTION 1. SHORT TITLE.

This Act may be cited as the `NIH Office of Autoimmune Diseases Act of
1999'.

Sec. 2.  ESTABLISHMENT OF OFFICE OF AUTOIMMUNE DISEASES AT NATIONAL INSTITUTES
OF HEALTH.

Title IV of the Public Health Service Act (42 U.S.C. 281 et seq.) is
amended
by inserting after section 404D the following section:

`AUTOIMMUNE DISEASES
`SEC. 404E. (a) ESTABLISHMENT- There is established within the Office of the
Director of NIH an office to be known as the Office of Autoimmune Diseases
(in this section referred to as the `Office'), which shall be headed by
a
Director appointed by the Director of NIH.
`(b) DUTIES-
`(1) IN GENERAL- The Director of the Office, in consultation with the
coordinating committee established under subsection (c), shall carry out the
following:
`(A) The Director shall recommend an agenda for conducting and
supporting research on autoimmune diseases through the national research
institutes. The agenda shall provide for a broad range of research and
education activities relating to biomedical, psychosocial, and rehabilitative
issues, including studies of the disproportionate impact of such diseases on
women.
`(B) The Director shall with respect to autoimmune diseases promote
coordination and cooperation among the national research institutes and
entities whose research is supported by such institutes.
`(C) The Director shall promote the sufficient allocation of the resources of
the National Institutes of Health for conducting and supporting research on
autoimmune diseases.
`(D) The Director shall biennially prepare a report that describes the
research and education activities on autoimmune diseases being conducted or
supported through the national research institutes, and that identifies
particular projects or types of projects that should in the future be
conducted or supported by the national research institutes or other entities
in the field of research on autoimmune diseases.
`(2) PRINCIPAL ADVISOR REGARDING AUTOIMMUNE DISEASES- With respect to
autoimmune diseases, the Director of the Office shall serve as the principal
advisor to the Secretary, the Assistant Secretary for Health, and the
Director of NIH, and shall provide advice to the Director of the Centers for
Disease Control and Prevention, the Commissioner of Food and Drugs, and other
relevant agencies.
`(c) COORDINATING COMMITTEE- The Director of NIH shall ensure that there is
in operation a committee to assist the Director of the Office in carrying out
subsection (b), that the committee is designated as the Autoimmune Diseases
Coordinating Committee, and that, to the extent possible, such Coordinating
Committee includes liaison members from other Federal health agencies,
including the Centers for Disease Control and Prevention and the Food and
Drug Administration.
`(d) DEFINITION- For purposes of this section, the term `autoimmune diseases'
includes rheumatoid arthritis, systemic lupus erythematosus, multiple
sclerosis, juvenile-onset diabetes, Sjogren's syndrome, scleroderma, chronic
fatigue syndrome, Crohn's disease and colitis, and other diseases or
disorders as determined by the Secretary.
`(e) AUTHORIZATION OF APPROPRIATIONS- For the purpose of carrying out this
section, there are authorized to be appropriated $950,000 for fiscal year
2000, and such sums as may be necessary for each subsequent fiscal year.'.


(Sample letter)
Date

The Honorable (full name)
United States House of Representatives
Washington, DC 20515

- or -
The Honorable (full name)
United States Senate
Washington, DC 20510

Dear Representative (last name) or Dear Senator (last name):

I am writing as a constituent to urge you to cosponsor and support HR
2573 - The NIH Office of Autoimmune Diseases Act of 1999 (or to your Senator:
S 1897 - The NIH Office of Autoimmune Diseases Act of 1999).

HR 2573 (or S 1897) will establish an Office of Autoimmune Diseases at the
National Institutes of Health (NIH) that would conduct research and
educational activities on autoimmune diseases through the national research
institutes.  The office would require only a modest annual operating budget
as existing institutes will remain responsible for the actual research.


Autoimmune diseases are a broad category of related diseases in which a
person's immune system attacks his/her own tissues.  There are more than 80
known autoimmune diseases, including such well known diseases as rheumatoid
arthritis, lupus, multiple sclerosis, and scleroderma.  The establishment of
an Office of Autoimmune Diseases at NIH will ensure that research will be
focused on the common factors that are prevalent in all autoimmune diseases.

(Insert personal information. This paragraph is an example.) It is
important that Celiac Disease and Dermatitis Herpetiformis be included
as an autoimmune disease. Celiac Disease and Dermatitis Herpetiformis
are autoimmune diseases whereby the lining of the small intestine is
destroyed in the presence of wheat, oats, rye, or barley. In case of
Dermatitis herpetiformis the immunoglobins are carried by the blood
stream and deposited underneath the skin. Enclosed is a copy of an
Newsweek stating that we now believe as many as 1 in 250 Americans
suffer from these diseases.

Thank you for taking the time to consider my views.  I urge you to cosponsor
and support this important legislation.

Sincerely,
(Your name, address, and phone number)


You can also email by connecting with http://www.senate.gov  or
http://www.house.gov.

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