Voices Ring through Halls of Congress on Historic Day

Voices Ring through Halls of Congress on Historic Day
Friday, October 4, 2013
By: Christina Relacion

Capitol Hill Day 2013

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Scleroderma advocates from California, Virginia and North Carolina met with Sen. Dianne Feinstein (D-CA). The group met with the senator in the halls of the Hart Senate Office Building. She told the contingent that she has a close friend who has the disease. Pictured left to right: Susan Nyanzi, of California; Martha Pardita, of Virginia; Sen. Dianne Feinstein; Catherine Baca, of California; and Christie Jordan, of North Carolina.

On Tuesday, Oct. 1, nearly 40 constituents representing 20 states visited the halls of Congress on an historic day. For the first time in 17 years, the U.S. government shutdown as congressional leaders struggle to reach an agreement on the country’s budget.

Thirty-six individuals, many of them scleroderma patients, had been preparing for the Capitol Hill visit for weeks. The Scleroderma Foundation worked with a D.C.-area consulting firm to arrange the Washington, D.C., trip that would focus on the Scleroderma Research and Awareness Act (H.R. 1429 and S. 1239), as well as recent developments regarding the Department of Defense’s (DOD) decision to end support of scleroderma-related medical research.

The Health and Medicine Counsel of Washington (HMCW) initially scheduled 48 meetings with elected officials. However, the government shutdown led the delegation of scleroderma advocates to improvise how they would deliver their important message.

Advocates knocked on office doors and would discuss the disease with anyone who would listen. “We needed to rely on creative collaborations as offices went dark and the staff were furloughed,” said advocate Catherine Baca, from Sierra Madre, Calif., who has scleroderma.

“While we had fewer meetings than expected due to the government shutdown, the quality of meetings was great. The important thing is that these individuals were able to tell their story,” said Robert J. Riggs, the Foundation’s CEO.

Despite having limited access to resources, such as no wheelchairs, in the halls of Congress, the Foundation’s advocacy champions prevailed and were able to make a substantial impact among influential officials like Sen. Dianne Feinstein (D-CA) and Sen. Al Franken (D-MN), as well as U.S. Reps. Kerry Bentivolio (R-MI-11) and Louise Slaughter (D-NY-25).

The focus of this year’s Capitol Hill visit was to enlist more support for the Scleroderma Research and Awareness Act bills, which was introduced into both chambers of Congress earlier this year. The group also wanted to discuss the DOD’s recent decision to remove scleroderma as one of the eligible diseases for research funds as part of its Peer Reviewed Research Program. Scleroderma has previously been recognized for the last five years and has directly benefitted during the last two grant cycles from research by the DOD. Additionally, advocates talked about the National Institutes of Health funding of scleroderma research.

Are you interested in becoming a part of the Scleroderma Foundation’s Advocacy efforts? If so, please email Anne Sweeney at advocacy@scleroderma.org for more information. You also can learn more at www.scleroderma.org/advocacy.