Advocates on Steps of Congress 2018
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HR 4638 National Commission on Scleroderma & Fibrotic Diseases

Ask your Congressperson in the House of Representatives to co-sponsor the National Commission on Scleroderma and Fibrotic Diseases Act of 2017 (H.R. 4638)

How? Enter your contact information below, and your letter will be hand delivered to your Congressperson’s office on Capitol Hill by Health and Medicine Counsel of Washington. The Scleroderma Foundation does not receive, retain or otherwise share contact information submitted for the sole purpose of communicating with members of Congress.

The Challenge

The National Institutes of Health (NIH) is part of the federal government and the world’s foremost medical research entity. Annually, NIH supports research projects that advance scientific understanding of the mechanisms of various diseases, including scleroderma. Medical breakthroughs facilitated by NIH research are often what industry uses to develop new therapies, cures and diagnostic tools.

Currently, research is limited to respective institutes such as the National Heart, Lung and Blood Institute for pulmonary and cardio fibrosis and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) for cystic fibrosis and liver cirrhosis. All institutes should be working together in conjunction to use their resources effectively for quality research.

The Solution

Congressmen Peter King (R-NY; District 2) and Eliot Engel (D-NY; District 16) of New York are leading the bill titled National Commission on Scleroderma and Fibrotic Diseases Act of 2017 (H.R. 4638).

This bill will establish a National Commission on Fibrotic Diseases within NIH to evaluate and to 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. At no additional cost to the federal government, the National Commission on Scleroderma and Fibrotic Diseases Act of 2017 establishes a national commission that will include the following:

  • Study of the incidence, duration and mortality rates of fibrotic diseases.
  • Evaluate facilities and resources for the diagnosis, prevision and treatment of fibrotic diseases.
  • Develop a long-range plan for the use and organization of national resources to advance research and deal with fibrotic diseases effectively.

Important political facts about this legislation:

  • It is bipartisan with support from both Democrats and Republicans.
  • It is budget neutral. The bill will not increase federal spending.
  • It is not disease-specific. Passage of the bill will help those affected by all fibrotic illnesses.

What You Can Do

Congressman King and Congressman Engel need their colleagues in the House to co-sponsor this important legislation. The only way your Congressperson will consider supporting this effort is if their constituents officially ask them to do so. The more legislators that support and co-sponsor this bill, the better the chance it has to be passed into law.

Schedule a meeting with your elected official’s local office during the August recess:

  1. The Scleroderma Foundation partners with Health and Medicine Counsel of Washington (HMCW) to coordinate our advocacy efforts.
  2. To set up a meeting with your elected official’s local office, contact Philip Goglas at Goglas@hmcw.org.
  3. Phil will assist you with making the proper connections and getting a meeting scheduled.
  4. Please note: All advocacy-related meetings related to the Scleroderma Foundation’s overall advocacy efforts must be coordinated through HMCW.
  5. Recipients

    • Your Representative

    Contact

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    Message

    HR4638 National Commission on Scleroderma and Fibrotic Diseases Act of 2017

    Dear [Decision Maker],

    I am one of your constituents and am writing to ask you to co-sponsor the National Commission on Scleroderma and Fibrotic Diseases Act of 2017 (H.R. 4638). This legislation is important to me and others who are affected by scleroderma and other fibrotic illnesses.

    H.R. 4638 will establish a National Commission on Fibrotic Diseases within NIH to evaluate and to make recommendations regarding improvements to 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.

    At no additional cost to the federal government, the National Commission on Scleroderma and Fibrotic Diseases Act of 2017 establishes a national commission to include the following:

    * Study of the incidence, duration, and mortality rates of fibrotic diseases.
    * Evaluate facilities and resources for the diagnosis, prevision and treatment of fibrotic diseases.
    * Develop a long-range plan for the use and organization of national resources to effectively advance research and effectively deal with fibrotic diseases.

    Please co-sponsor the National Commission on Scleroderma and Fibrotic Diseases Act of 2017 (H.R. 4638) by contacting either Deena Tauster in the office of Congressman Peter King at 5-7896 (Deena.Tauster@mail.house.gov) or Catherine Rowland in the office of Congressman Elliot Engel at 5-2464 (Catherine.Rowland@mail.house.gov). Thank you considering my request.

    Sincerely,
    [Your Name]
    [Your Address]
    [City, State ZIP]