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Enhancing NIH Research on Autoimmune Disease (2022)

Chapter:Appendix F: NIH Office of Autoimmune Disease Research Act of 1999

« Previous: Appendix E: Mission Statements of NIH's Institutes and Centers
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page493
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page494
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page495
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page496
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page497
Suggested Citation:"Appendix F: NIH Office of Autoimmune Disease Research Act of 1999." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Page498

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Appendix F NIH Office of Autoimmune Disease Research Act of 1999 493 PREPUBLICATION COPY—Uncorrected Proofs

494 ENHANCING NIH RESEARCH ON AUTOIMMUNE DISEASE II S. 1897 106TH CONGRESS 1ST SESSION 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 SENATE OF THE UNITED STATES NOVEMBER 9, 1999 Mr. BIDEN introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 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. 1 Be it enacted by the Senate and House of Representa- 2 tives of the United States of America in Congress assembled, 3 SECTION 1. SHORT TITLE. 4 This Act may be cited as the ‘‘NIH Office of Auto- 5 immune Diseases Act of 1999’’. 6 SEC. 2. ESTABLISHMENT OF OFFICE OF AUTOIMMUNE DIS- 7 EASES AT NATIONAL INSTITUTES OF HEALTH. 8 Title IV of the Public Health Service Act (42 U.S.C. 9 281 et seq.) is amended by inserting after section 404D 10 the following section: PREPUBLICATION COPY—Uncorrected Proofs

APPENDIX F 495 2 1 ‘‘AUTOIMMUNE DISEASES 2 ‘‘SEC. 404E. (a) ESTABLISHMENT.—There is estab- 3 lished within the Office of the Director of NIH an office 4 to be known as the Office of Autoimmune Diseases (in 5 this section referred to as the ‘Office’), which shall be 6 headed by a Director appointed by the Director of NIH. 7 ‘‘(b) DUTIES.— 8 ‘‘(1) IN GENERAL.—The Director of the Office, 9 in consultation with the coordinating committee es- 10 tablished under subsection (c), shall carry out the 11 following: 12 ‘‘(A) The Director shall recommend an 13 agenda for conducting and supporting research 14 on autoimmune diseases through the national 15 research institutes. The agenda shall provide 16 for a broad range of research and education ac- 17 tivities relating to biomedical, psychosocial, and 18 rehabilitative issues, including studies of the 19 disproportionate impact of such diseases on 20 women. 21 ‘‘(B) The Director shall with respect to 22 autoimmune diseases promote coordination and 23 cooperation among the national research insti- 24 tutes and entities whose research is supported 25 by such institutes. •S 1897 IS PREPUBLICATION COPY—Uncorrected Proofs

496 ENHANCING NIH RESEARCH ON AUTOIMMUNE DISEASE 3 1 ‘‘(C) The Director shall promote the ap- 2 propriate allocation of the resources of the Na- 3 tional Institutes of Health for conducting and 4 supporting research on autoimmune diseases. 5 ‘‘(D) The Director shall annually prepare a 6 report that describes the research and edu- 7 cation activities on autoimmune diseases being 8 conducted or supported through the national re- 9 search institutes, and that identifies particular 10 projects or types of projects that should in the 11 future be conducted or supported by the na- 12 tional research institutes or other entities in the 13 field of research on autoimmune diseases. 14 ‘‘(2) PRINCIPAL ADVISOR REGARDING AUTO- 15 IMMUNE DISEASES.—With respect to autoimmune 16 diseases, the Director of the Office shall serve as the 17 principal advisor to the Secretary, the Assistant Sec- 18 retary for Health, and the Director of NIH, and 19 shall provide advice to the Director of the Centers 20 for Disease Control and Prevention, the Commis- 21 sioner of Food and Drugs, and other relevant agen- 22 cies. 23 ‘‘(c) COORDINATING COMMITTEE.—The Director of 24 NIH shall ensure that there is in operation a committee 25 to assist the Director of the Office in carrying out sub- •S 1897 IS PREPUBLICATION COPY—Uncorrected Proofs

APPENDIX F 497 4 1 section (b), that the committee is designated as the Auto- 2 immune Diseases Coordinating Committee, and that, to 3 the extent possible, such Coordinating Committee includes 4 liaison members from other Federal health agencies, in- 5 cluding the Centers for Disease Control and Prevention 6 and the Food and Drug Administration. 7 ‘‘(d) REPORT.—Not later than October 1, 2001, the 8 Comptroller General shall prepare and submit to the ap- 9 propriate committees of Congress a report concerning the 10 effectiveness of the Office in promoting advancements in 11 research, diagnosis, treatment, and prevention related to 12 autoimmune diseases. 13 ‘‘(e) DEFINITION.—For purposes of this section, the 14 term ‘autoimmune diseases’ includes diseases or disorders 15 in which autoimmunity is thought to play a significant 16 pathogenetic role, as determined by the Secretary. 17 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—For the 18 purpose of carrying out this section, there are authorized 19 to be appropriated $950,000 for fiscal year 2000, and 20 such sums as may be necessary for each of fiscal years 21 2001 and 2002.’’. Æ •S 1897 IS PREPUBLICATION COPY—Uncorrected Proofs

PREPUBLICATION COPY—Uncorrected Proofs

Next: Appendix G: Analysis of the NIH Autoimmune Research Grant Portfolio: Methodology »
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Autoimmune diseases occur when the body's immune system malfunctions and mistakenly attacks healthy cells, tissues, and organs. Strong data on the incidence and prevalence of autoimmune diseases are limited, but a 2009 study estimated the prevalence of autoimmune diseases in the U.S. to be 7.6 to 9.4 percent, or 25 to 31 million people today. This estimate, however, includes only 29 autoimmune diseases, and it does not account for increases in prevalence in the last decade. By some counts, there are around 150 autoimmune diseases, which are lifelong chronic illnesses with no known cures. The National Academies of Sciences, Engineering, and Medicine was asked to assess the autoimmune disease research portfolio of the National Institutes of Health (NIH).

Enhancing NIH Research on Autoimmune Disease finds that while NIH has made impressive contributions to research on autoimmune diseases, there is an absence of a strategic NIH-wide autoimmune disease research plan and a need for greater coordination across the institutes and centers to optimize opportunities for collaboration. To meet these challenges, this report calls for the creation of an Office of Autoimmune Disease/Autoimmunity Research in the Office of the Director of NIH. The Office could facilitate NIH-wide collaboration, and engage in prioritizing, budgeting, and evaluating research. Enhancing NIH Research on Autoimmune Disease also calls for the establishment of long term systems to collect epidemiologic and surveillance data and long term studies (20+ years) to study disease across the life course. Finally, the report provides an agenda that highlights research needs that crosscut many autoimmune diseases, such as understanding the effect of environmental factors in initiating disease.

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