Federal Funding for Scleroderma Research

It is through medical research that a cure for scleroderma will be found.

The need for increased funding for scleroderma research is vital. Scleroderma, in its various forms, afflicts as many people as muscular dystrophy, cystic fibrosis or ovarian cancer, yet research is vastly underfunded by the government in comparison. An aggressive approach on Capitol Hill to educate lawmakers about scleroderma and motivate them to take action will result in expedited research progress that will have a direct impact on people living with scleroderma.

Scleroderma-specific legislation is pending on Capitol Hill

The Scleroderma Research Foundation is encouraged by newly proposed legislation to expand the federal government’s focus on scleroderma research. For any legislation to be passed into law, congressional leaders must hear from their constituents.

A new bill has been introduced by Representative Lois Capps (D-CA) bill H.R. 1429 co-sponsored by Representative Peter King (R-NY), that aims to expand the scleroderma research and awareness activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Centers for Disease Control and Prevention. The proposed legislation is a follow up to S.B.1545 and its companion bill H.R. 2408 "Scleroderma Research and Awareness Act" in the 111th Congress, which called for significant increases in scleroderma research funding at the National Institutes of Health and for significant increases in funding for public awareness of scleroderma by the Centers for Disease Control and Prevention. While H.R. 2408 passed in the House, S.B. 1545 did not pass the Senate, requiring introduction of new legislation for the 113th Congress. We applaud Representative Capps and King for their commitment to improve the lives for those living with scleroderma.

You can directly impact the long-term success of finding a cure by reaching out to your congressional representatives and encouraging them to co-sponsor. If scleroderma is to become a solvable problem, more people must come forward and a consensus must be reached so increased funding can be made available to support the highest quality research.

You can help make a diference by contacting your legislators and encouraging family and friends to do the same at the local, state and federal levels to ensure scleroderma research develops into a priority on the scientific/political agenda. You can locate the legislators in your area by entering your zip code at: http://www.congress.org/congressorg/home/.

Public officials, especially at the congressional level, track the number of letters they receive on a given subject. The more letters they receive, the more important they realize an issue has become to their constituency. Your legislators recognize that each letter represents a vote! You can voice your support for furthering the need for enhanced levels of scleroderma research funding by emailing or faxing a letter to your representative.

While the most effective letters are those that are personal, feel free to use the text below as a draft for your own effort. Your letter should be concise, informed, polite and clearly state the need for increased federal funding of scleroderma research by passing the “Scleroderma Research and Awareness Act”:

Sample Letter

Dear [NAME OF RECIPIENT] :

Thank you for your leadership on issues that matter to the people of our country. As one of your constituents, I’m writing to you today to encourage you to co-sponsor H.R. 1429, the “Scleroderma Research and Awareness Act”. Introduced on April 9, 2013 by Representative Lois Capps (D-CA). This bill would increase funding for expanded scleroderma research at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

Scleroderma is a chronic and disabling connective tissue disease resulting from an overproduction of collagen. Scleroderma can affect many areas of the body including the heart, lungs, kidneys and gastrointestinal system. There is no known cause and no cure. Women account for 80% of all diagnoses, but the disease affects men and women of all ethnicities and ages. 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. Despite these burdensome figures, the federal investment in scleroderma research is only $19 million per year.

H.R. 1429 would call for an increase in annual funding for scleroderma research. The funds would be used to develop and evaluate new treatment methods, research the link between scleroderma and secondary conditions like pulmonary hypertension, establish a patient registry and provide support for the training of new scleroderma investigators.

[ENTER YOUR OWN TEXT HERE TO PERSONALIZE THE MESSAGE.]

Thank you for your consideration of this issue that is so important to me and many others. I would appreciate a response from you informing me of your intentions regarding co-sponsorship.

Sincerely,

[YOUR NAME]
[YOUR ADDRESS AND CONTACT INFORMATION]