Senator Kirsten Gillibrand (D-NY)

Advocacy Program Continues to Build Momentum

On July 30, Senator Kirsten Gillibrand (D-NY) introduced scleroderma-specific legislation in the U.S. Senate.  S. 1545, the “Scleroderma Research and Awareness Act” is a companion bill to H.R. 2408, the “Scleroderma Research and Awareness Act,” which is being considered in the U.S. House of Representatives.  The text included in both bills is the same.  Each bill calls for significant increases in scleroderma research funding at the National Institutes of Health (NIH) and for significant increases in funding for public awareness of scleroderma by the Centers for Disease Control and Prevention (CDC).

Having two pieces of scleroderma-specific legislation in the U.S. Congress is a significant step forward in the Foundation’s effort to get scleroderma-specific legislation passed in the U.S. Congress for the first time ever.  Within a seven-day period, H.R. 2408 picked up 10 congressional co-sponsors, which brings the official number of co-sponsors to 41. 

Finally, on July 30, the full Senate Appropriations Committee approved its Fiscal Year (FY10) 2010 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) Appropriations bill.  The full Senate is expected to consider the legislation when lawmakers return from their summer recess in the fall.

What is significant about this legislation is that scleroderma is one of only three diseases specifically mentioned in the FY10 Appropriations recommendations to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).  While this legislation does not call for an increase in funding specifically for scleroderma research or public awareness, “The [Senate Appropriations] Committee continues to encourage CDC to undertake steps to increase awareness in the public and larger healthcare community to all for earlier diagnosis and treatment” of scleroderma.  In addition, the Senate Appropriations Committee requests an update from NIAMS as part of its fiscal year 2011 congressional budget for justification regarding its scleroderma-related activities.

The Foundation’s Advocacy Program could not be more pleased with the progress it has made in 2009 in its ongoing effort to increase funding for scleroderma research and increase public awareness of the disease.  For further information about the two bills and about the Advocacy Program, please visit the Foundation’s Advocacy Web page at:
http://www.scleroderma.org/advocacy/advohome.shtm.