A Crucial Year Ahead for Lupus Advocates on Capitol Hill

By Kimberly Cantor

There is never a dull moment in Washington, DC. A last minute deal on the “fiscal cliff” made for a very eventful, suspenseful and dramatic end to 2012 and the 112th Congress. On January 3, 2013, the new 113th Congress was sworn-in, and while our nation will deal with the same challenging problems and hard questions, on paper, the new Congress is starting with a clean slate.

The Lupus Foundation of America has always been a great force in advocacy on Capitol Hill and with the Executive Branch. Our strong efforts are driven and backed by amazing lupus activists from across the country. In 2012, we led several groundbreaking efforts to move forward the battle against lupus in Congress. This year we will continue to build on those efforts and on the work we are doing with key federal agencies to bring more attention and funding for lupus, and to ensure support for legislation that helps people with lupus.

Looking back to 2012, the Lupus Foundation of America spearheaded efforts to create the first-ever Congressional Lupus Caucus in the U.S. House of Representatives. Representatives Tom Rooney (R-FL), Bill Keating (D-MA), Illeana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) emerged as our congressional champions and served as co-chairs for the newly formed, bipartisan caucus aimed at spreading awareness of lupus on Capitol Hill. Through the efforts of lupus activists, 58 U.S. Representatives joined the Caucus in the 112th Congress.

A highlight of the Caucus was a congressional briefing held July and co-hosted by the Lupus Foundation of America. The primary goal of the briefing was to educate members of Congress and their staff on lupus explained by highlighting the variety of symptoms and how those symptoms and disease impact affects each person differently. The briefing was a great success and helps build momentum for the Caucus and the disease on Capitol Hill. The caucus also engaged with the Food and Drug Administration and supported our efforts with Lupus Awareness Month. We are excited to continue working with the Caucus and our congressional champions in the 113th Congress.

Senator Tom Rooney (R-FL) and his staff Put On Purple for Lupus Awareness Month in May

The Lupus Foundation of America is looking forward to a great year in advocacy. In 2013, we will continue our support for increasing research funding for lupus at the National Institutes of Health (NIH) and at the Department of Defense Peer-Reviewed Medical Research Program. We will work to build on the successful National Lupus Patient Disease Registry program at the Centers for Disease Control (CDC) and promote the great efforts of the Department of Health and Human Services (HHS) Office on Minority Health lupus initiative, which is aimed at improving physician education in lupus. In addition, we will continue to support the Congressional Lupus Caucus and look to grow its membership.

The Foundation cannot do it alone, and we need your help. Becoming a lupus activist is an easy, effective, and empowering way to promote the need for additional research in lupus, demonstrate support for legislation impacting people with lupus and their families, and support awareness of lupus among elected officials.

Help us tell the story of lupus and commit to becoming a lupus activist in 2013. As a lupus activist, there are multiple ways to engage, ranging from easy and simple to more timely and in-depth. Each is important and effective. Ways to engage include:
• Join the Lupus Legislative Action Center. As a member of this network, lupus activists will receive timely action alerts asking for you to take an action (e-mail, phone call) on a legislative or policy issue important to people with lupus on Capitol Hill that need your attention and support.
• Support the Lupus Foundation of America’s efforts to collect more than 50,000 signatures on a petition to Congress asking for their support in increasing lupus research. Sign the petition at www.cruelmystery.org, and share and promote the petition with your friends and family.
• Attend the Lupus Foundation of America’s National Lupus Advocacy Conference on June 24 and 25 in Washington, DC. Lupus activists from across the country will band together on Capitol Hill and meet with their federal legislators about key issues impacting the lupus community and deliver the research petition.

Click here to become a lupus activist and to join us in the fight to solve the cruel mystery.

Kimberly Cantor is Senior Director of Public Policy and Government Relations for the Lupus Foundation of America