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Capitol Hill Day 2018
Forty advocates from 23 states gathered in Washington, D.C. on April 17, 2018.
Advocates from the Scleroderma Foundation included patients, caregivers, chapter leaders and national office staff. Some were newly diagnosed, while others have lived with scleroderma for many years. Together, our advocates were on Capitol Hill to ask U.S. Representative to co-sponsor H.R. 4638, the National Commission on Scleroderma and Fibrotic Diseases Act of 2017.
If passed, this bill will establish a National Commission on Fibrotic Diseases within the National Institutes of Health (NIH). The commission's task will be to evaluate and make recommendations regarding improvements to the coordination and advancement of NIH-supported research activities related to fibrosis and fibrotic diseases, which may include scleroderma as a prototypical condition that can cause fibrosis in various organs.
The bill is bipartisan--it has support from Republicans and Democrats. It is a budget neutral bill, meaning that it would not increase federal spending. It is not disease-specific. The work of the commission will benefit scleroderma patients as well as those living with other fibrotic illnesses.
You can join the effort to advocate for additional support for research!
Download a sample letter, fill in the blanks with your contact information, and send it as an email attachment to firstname.lastname@example.org. Your letter will be hand delivered it to your member of Congress on Capitol Hill.
If you are interested in learning more about the bill as well as its current progress, please visit the link below:
Rep. Peter King (R-NY2) and Rep. Elliot Engel (D-NY16) are co-leaders of the House bill that was introduced on December 13, 2017. If passed, the bill will establish (at no additional cost to the federal government) a National Commission on Fibrotic Diseases with the National Institutes of Health (NIH). This commission would focus on the following:
- Evaluate and make recommendations regarding improvements to the coordination and advancement of NIH-supported research activities related to fibrosis and fibrotic diseases;
- Study the incidence, duration and mortality rates of fibrotic diseases;
- Evaluate facilties and resources for the diagnosis, prevision and treatment of fibrotic diseases; and
- Develop an long-range plan for the use and organization of national resources to effectively advance research on fibrotic diseases.
Rep. Engel is a member of the Energy and Commerce Committee--the oldest standing legislative committee which is vested with the broadest jurisdiction of any congressional authorizing committee. Moreover, the committee has responsibility for matters that include consumer protection, food and drug safety, public health and research. The previous bill that was introduced in the 114th Congress (H.R. 3666) had 51 cosponsors from 19 states and the District of Columbia. Current advocacy efforts include re-engaging those members of the House and Senate asking for their co-sponsorship of H.R. 4638.
The Scleroderma Foundation appreciates all patient advocates across the country who have participated in all aspects of patient advocacy--signing advocacy letters, raising awareness throughout local communities, meeting with elected officlals in their local offices as well as sharing personal stories of how scleroderma has affected your life.