Scleroderma Foundation Advocacy Efforts

Featured in the April, 2014 Scleroderma, Vasculitis & Myositis eNewsletter

Jay Peak

Executive Director of the Scleroderma Foundation Tri-State Chapter


Advocacy is the act of educating the public about an issue, supporting or defending a cause, and recommending an action.

The Scleroderma Foundation advocates on the behalf of the entire scleroderma community. Over the years, the Scleroderma Foundation has formed an advocacy committee, pushed for specific legislation, assisted local advocates in making contact with elected officials and organized trips for scleroderma patients and family members to visit their Congressional leaders in Washington, D.C. These important actions helped the foundation cultivate relationships with elected officials and strengthen existing relationships with others. It has also bridged the miles enabling the scleroderma issue to be brought to the national stage.

The mix of making sure local congressional representatives know about scleroderma and collectively speaking on Capitol Hill has especially helped propel two efforts that seek funding for scleroderma research.

Scleroderma Research and Awareness Act

The Scleroderma Research and Awareness Act has been introduced as a bill for the past several sessions of congress. While the wording has been refined over the years, this legislation seeks to improve health outcomes for scleroderma patients by directing NIH to expand research activities and enabling an innovative public awareness program through the Centers for Disease Control and Prevention.

Timeline

  • In 2010, the legislation was passed by the House, however the Senate did not vote on the bill before the Congressional session ended.
  • In the 112th Congressional session (2011-2012), the bill was introduced and garnered House support from 83 co-sponsors, but no further action was taken.
  • In the current 113th Congress, 34 Representatives are in support of H.R. 1429 which was introduced by Rep. Lois Capps (D-CA24) and Rep. Peter King (R-NY2) and is currently in committee for review. The Senate version – S. 1239 – introduced by Sen. Kirsten Gillibrand (D-NY), is also being reviewed and support is being sought.

The desire is for the bills to be brought up for vote before the current session ends at the end of 2014.

Peer-Reviewed Medical Research Program (DoD PMRP)

For many years, scleroderma was a condition named as “eligible” for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program. As a result, over $10 million in meritorious grants have been funded to contribute to the understanding and treatment of scleroderma and related conditions.

In 2014, scleroderma was dropped from the “eligible” list, meaning new relationships need to be cultivated and additional awareness needs to be created among congressional representatives to get scleroderma back on the list. 

Current Direction

With the 113th Congress heading toward conclusion and 2015 funding proposals in development, it is a tall order to ensure the scleroderma cause is evident to lawmakers, especially those that influence the Department of Defense medical research budget, the House Energy and Commerce Committee and the Senate Health, Education, Labor and Pensions Committee.  It is essential that Senators and Representatives, as well as those on the committees, are aware of scleroderma and the toll it takes. 

For the Research and Awareness Act, there is an ongoing letter (and email) writing campaign that has generated thousands of letters asking congressional representatives to co-sponsor the bill and help push for a vote on the Act in both the House and the Senate. As more senators and representatives sign on as bill co-sponsors, the greater the likelihood it will be introduced for a vote.

For the DOD PRMP, we must focus on those involved with the Defense Appropriations Subcommittee. The goal of the Foundation is to ensure that members are aware of the good that the program has done and ask for inclusion in the next round of funding. 

In March, the Scleroderma Foundation’s Advocacy Committee initiated a “grasstops” effort by enlisting key chapter leaders from across the country to send letters to their senators, some of whom sit on the Defense Appropriations Subcommittee.  There was a tremendous response to the call to action, and many letters were hand-delivered to senate offices during the last week of March.

The grasstops effort will continue focusing on senators in key states including: Alabama, Alaska, Arkansas, California, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Mississippi, Missouri, Rhode Island, South Carolina, South Dakota, Tennessee, Vermont, and Washington. This will be followed by a grassroots communication effort beginning in May.

Looking Ahead

The Foundation’s next effort is to organize an advocacy summit on Capitol Hill on May 6. Persons affected by scleroderma and having a desire to affect change will work in teams, participating in face-to-face meetings with members of the Senate and the House and/or their key medical affairs staff member(s).  The meetings will allow participants to share their story, answer questions and directly ask senators and representatives to support both pieces of legislation.

You Can Help

Information about both of these efforts is posted on the Scleroderma Foundation website, www.Scleroderma.org/Advocacy. If you desire to help or receive updates about or Scleroderma Foundation advocacy efforts, press the “Become an Advocate” button and sign-up.

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