II 113th CONGRESS 1st Session S. 1239 IN THE SENATE OF THE UNITED STATES June 27, 2013 Mrs. Gillibrand introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To expand the research and awareness activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the Centers for Disease Control and Prevention with respect to scleroderma, and for other purposes.

1. Short title This Act may be cited as the Scleroderma Research and Awareness Act . 2. Findings The Congress finds as follows: (1) Scleroderma is a chronic, disabling and often fatal autoimmune disease in which the body’s soft tissues contract and harden due to an overproduction of collagen. (2) Scleroderma causes damage to one or more of the body’s organ systems, including the skin, heart, lungs, kidneys, gastrointestinal tract, and blood vessels. (3) It is estimated that 300,000 people in the United States suffer from scleroderma, 80 percent of whom are women often diagnosed during their child bearing years. (4) Choctaw Native Americans, African-Americans, and Hispanics are disproportionately affected by scleroderma and tend to exhibit more rapidly progressing and severe cases of the disease. (5) The causes of scleroderma are unknown. (6) Scleroderma is associated with many other conditions including pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, Sjögren’s Syndrome and lupus. (7) The estimated total annual economic impact of scleroderma in the United States is in excess of $1,500,000,000. (8) Annual Federal support for scleroderma research at the National Institutes of Health is currently estimated at $20,000,000. 3. National institute of arthritis and musculoskeletal and skin diseases; scleroderma research expansion (a) In general The Director of The National Institute of Arthritis and Musculoskeletal and Skin Diseases shall expand, intensify, and coordinate the activities of the Institute with respect to scleroderma, with particular emphasis on the following areas: (1) Research focused on the etiology of scleroderma and the development of new treatment options. (2) Clinical research to evaluate new treatments options. (3) Basic research on the relationship between scleroderma and secondary conditions such as pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, Sjögren’s Syndrome (and other diseases as determined by the Director). (4) Establishment of scleroderma patient registries, including family and childhood onset registries. (5) Support for training of new clinicians and investigators with expertise in scleroderma. (b) Biennial reports As a part of the biennial report made under section 403 of the Public Health Service Act ( 42 U.S.C. 283 ), the Secretary shall include information on the status of scleroderma research at the National Institutes of Health. (c) Authorization of appropriations (1) In general For the purpose of carrying out subsection (a), there are authorized to be appropriated $25,000,000 in fiscal year 2014, $30,000,000 in fiscal year 2015, and $35,000,000 in fiscal year 2016. (2) Reservations Of the amounts authorized to be appropriated under paragraph (1), not more than 15 percent shall be reserved for the training of qualified health professionals in biomedical research focused on scleroderma. 4. Promoting public awareness of scleroderma (a) In General The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall carry out an educational campaign to increase public awareness of scleroderma. Print, video, and Web-based materials distributed under this program may include— (1) basic information on scleroderma and its symptoms; (2) information on the incidence and prevalence of scleroderma; (3) diseases and conditions affiliated with scleroderma; or (4) the importance of early diagnosis and treatment. (b) Dissemination of Information The Secretary is encouraged to disseminate information under subsection (a) through a cooperative agreement with a national nonprofit entity with expertise in scleroderma. (c) Report to Congress Not later than September 30, 2013, the Secretary shall report to the Committees on Health, Education, Labor, and Pensions and Appropriations of the Senate and the Committees on Energy and Commerce and Appropriations of the House of Representatives on the status of activities under this section. (d) Authorization of Appropriations For the purpose of carrying out this section, there is authorized to be appropriated $2,500,000 for each of fiscal years 2014, 2015, and 2016.