Tuesday, May 17, 2016

LFA-Led Efforts to Secure Lupus Line Item in DoD


 
Advocacy Update
 


Lupus Foundation of America Applauds Congressional Action to Expand Lupus Research
Defense Appropriations bill includes $5-million lupus research program 

Today, the U.S. House of Representatives Appropriations Committee passed an appropriations bill that includes a $5-million provision for funding a lupus specific research program within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD).

Today's vote is the culmination of more than a decade of Lupus Foundation of America-led efforts which gained momentum after the formation of the Congressional Lupus Caucus.  We thank the Congressional Lupus Caucus Co-Chairs – Rep. Thomas J. Rooney (R-FL), Rep. William Keating (D-MA), Rep. Ileana Ros-Lehtinen (R-FL), Rep. Eddie Bernice Johnson (D-TX) – for their continued efforts to include a lupus-specific medical research program within this bill.

The following statements summarize the importance of this research funding:

Rep. Thomas Rooney: "We originally established the Lupus Caucus as a way to help raise awareness here on Capitol Hill to the 1.5 million Americans who have this unpredictable and sometimes fatal disease. I'm proud that four years later we were able to secure such critical funding to create this lupus-specific medical research program through the Department of Defense. Lupus affects millions – especially women – including those who serve or have served in uniform. I am hopeful that this research will help break down research barriers and bring positive changes to their lives."

Rep. Eddie Bernice Johnson: "It was a pleasure to work with my fellow Congressional Lupus Caucus co-chairs and the Lupus Foundation of America to establish this unprecedented lupus-focused program at the Department of Defense. It is clear that research projects in the Department of Defense provide valuable insight to other diseases and lupus must be a part of this advanced research to not only benefit the active duty military personnel affected by lupus, but also the 1.5 million Americans living with lupus."

Rep. William Keating "I am proud to have joined with my Lupus Caucus Co-Chairs in supporting this critical funding for the lupus research program though the Department of Defense. While we have made great strides in treating lupus and reducing the number of misdiagnoses, a majority of those afflicted continue to be incorrectly diagnosed due to a lack of awareness or understanding of the disease. This particularly impacts women, who are nine times more likely to be affected than men. Through this successful inclusion of funding dedicated to the Department of Defense Congressionally Directed Medical Research Program, sufferers of lupus can rest assured that future advancements in diagnoses, treatment, and education will only continue to grow."

Rep. Ileana Ros-Lehtinen: "I am no stranger to the hardships that military families face, nor the struggle that individuals with lupus confront in their daily lives. My husband, Dexter, my step-son, Douglas, and his wife, Lindsay, are all veterans, while my step-daughter Katharine was diagnosed with lupus many years ago. These new lupus research funds are urgently needed, and I am confident they will prove to be life-changing for American service members and others living with lupus."

The Lupus Foundation of America has led efforts to secure new funding for lupus research and education. 

"Beginning in 2003, the Foundation pioneered efforts to create a lupus-specific medical research program under the aegis of the Congressionally Directed Medical Research Program, Department of Defense," said Conrad Gehrmann, Lupus Foundation of America Board Chair. The proposal for a discreet lupus medical research program within the Department of Defense began to gain traction due to interest of the Congressional Lupus Caucus, an entity established by the Foundation in 2012."  

"We applaud the Congressional Lupus Caucus and members of the House for recognizing the urgent need for a dedicated lupus research program in the Department of Defense and look forward to full Congressional passage soon," said Gehrmann.

The Foundation testified before the Senate Defense Subcommittee, authoring a white paper – Lupus and the Military, and meeting with CDMRP officials at Fort Detrick. Most recently, the Foundation worked with the Congressional Lupus Caucus to secure signatures for a Dear Colleague letter to establish the Lupus Medical Research Program at the DoD. The letter was well-supported garnering 23 signatures from members of Congress.

Research data indicates that our U.S. servicemen and women may be at high risk for developing lupus and other autoimmune diseases. Factors such as post-traumatic stress disorder (PTSD), vaccines, chemical and toxins, ultraviolet light, certain drugs and infectious agents have been associated with the development of lupus and other autoimmune diseases.  

"Our warfighters represent many subsets of the population at high risk for developing lupus," said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. "Our vision is to apply these funds to conduct research on disease risk and prevention in order to identify factors that predict disease progression and then use this information to assess risk in the broader population."

"We look forward to continuing to work toward increasing federal funding for lupus research and we thank all lupus advocates and organizations for their support," said Raymond. 

The appropriations bill next goes to the full House of Representatives before heading to the Senate for a final vote.

See our timeline for a historical perspective of efforts to get to this critical vote.  

 

 


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