Jul. 11, 2012

The Lupus Foundation of America and the Congressional Lupus Caucus Hold Briefing on Capitol Hill

Today, the Lupus Foundation of America (LFA), the leading voluntary health organization for people with lupus, convened on Capitol Hill with the Congressional Lupus Caucus and lupus community partners to share with our nation's leaders the current state of lupus research. The Briefing included presentations from lupus experts as well as individuals with lupus, shedding light on this devastating disease and the unique challenges to advancing lupus research and developing new lupus treatments. The Briefing is the inaugural gathering of the first-ever Congressional Lupus Caucus, co-chaired by U.S. House of Representatives members Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA).

Spearheaded by the LFA, the Congressional Lupus Caucus was founded in February 2012 with the primary purpose of ensuring all Members of Congress are armed with the understanding of the impact of lupus and actively support advancement of lupus research and increased awareness of the disease among the public and health professionals. To date, 43 Members of Congress have joined the Caucus, and recruitment efforts are ongoing.

“The Lupus Foundation of America is pleased to be working together with our Congressional champions and our lupus community partners to educate Members of Congress and their staff about lupus, and to identify ways to accelerate advancement in lupus research,” said Sandra C. Raymond, President and CEO, Lupus Foundation of America. “While we have seen great progress over the past decade, we still have much work to do to find the next breakthrough that will improve the care for people with lupus, and we can’t do it without the support of Members of Congress. The Lupus Foundation of America is committed to working with Congress as well as federal and state agencies to bring lupus to the forefront of the nation’s health care agenda and improve the lives of the millions of Americans affected by lupus.”

“As a co-founder of the Congressional Lupus Caucus, I am honored to be at our inaugural gathering today with my fellow co-chairs to help spread awareness of lupus on Capitol Hill,” adds Representative Tom Rooney (R-FL).“Lupus is a devastating disease for which there is no cure, and it is my hope that Members of Congress can work together to help advance lupus research and increase lupus awareness to improve the quality of life for people with lupus and their families.”

Lupus, a chronic autoimmune disease that affects an estimated 1.5 million Americans, can severely impact the everyday lives of those living with the disease. Lupus requires aggressive drug treatments that come with significant biological, psychological, and social ramifications. There is a great need to find new, more tolerable and targeted therapies that will help bring lupus under control without the harmful side effects presently found in many of the older therapies. In more than a half century, the Food and Drug Administration (FDA) has approved only one new drug designed specifically to treat lupus.

“I have been living with lupus for 34 years, and I have seen first-hand what a devastating toll lupus can take on your body – as well as on your overall quality of life,” explains Karen Winston Wilson, a strong advocate for lupus awareness. “Lupus caused my kidneys to fail. I was forced to leave my job and couldn’t care for my family. It wasn’t until I received a kidney from my brother in 1999 that my health began to improve. Not everyone with lupus is as fortunate as I am. We need to find new ways to manage and treat this terrible disease -- and find a cure -- and for this to happen, it is crucial for Members of Congress to support programs designed to advance lupus research and increase lupus awareness.”


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