Yesterday, Senator Gillibrand introduced legislation giving hope to the estimated 300,000 Americans, including 20,000 New Yorkers, living with the devastating autoimmune disease scleroderma. Mr. Jeffrey Mace, a patient from New York City and President of the Scleroderma Foundation’s Tri-State Chapter, which includes New York, said … “We are incredibly grateful to Senator Gillibrand for her commitment to our cause and sponsorship of the first scleroderma specific bill in the United States Senate. The promise of a better future for our patients lies in biomedical research and this legislation is a major step forward in our effort to find better treatments and eventually a cure for this disease.”
Scleroderma is a chronic and disabling connective tissue disorder resulting from an overproduction of collagen. The word “scleroderma” means hardening of the skin, which is one of the most visible manifestations of the disease. Scleroderma can affect many areas of the body including the heart, lungs, kidneys, and gastrointestinal system. There is no known cause and no cure. The disease disproportionally impacts women and minorities. African Americans are at a higher risk of developing systemic scleroderma, and women account for 80% of all diagnoses. The estimated total economic impact of scleroderma in the United States is $1.5 billion annually. The direct cost of treatment for patients is more than $460 million annually.
The Scleroderma Research and Awareness Act would:
- Direct the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma. The legislation authorizes $25 million in FY10, $30 million in FY11, and $35 million in FY12 for this purpose. Priority areas include:
- Development and evaluation of new treatments.
- Research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome.
- Establishment of family and “childhood-onset” patient registries.
- Support for the training of new investigators
- Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.The legislation authorizes $2.5 million in FY10, FY11, and FY12 for the awareness initiative.
“The Scleroderma Foundation is proud to be in the forefront of advocating for greater research for this devastating disease,” commented Joseph P. Camerino, Ph.D., Chair of the Foundation’s National Board of Directors. “With the introduction of this critical legislation, the scleroderma community has renewed hope that a cure will be found. We are extremely grateful to Senator Gillibrand for her leadership on our behalf.”
A companion bill has been introduced in the House of Representatives by Congresswoman Lois Capps.