Activists Do Make a Difference

by Kimberly Cantor, Senior Director of Public Policy and Government Relations

Kimberly Cantor

I am inspired by you - by lupus activists. It is that simple. The excitement, enthusiasm, and empowerment felt during the recent Lupus Foundation of America National Lupus Advocacy Summit held June 24-25, 2013 was amazing. All across Capitol Hill, I heard “we are lupus activists; we are here to tell our stories and make our voices heard!” The Advocacy Summit is always an energizing and rewarding event, and 2013 was no exception.

More than 250 lupus activists representing 30 states and the District of Columbia joined forces and spoke with one voice on Capitol Hill. Lupus Activists asked their Senators and Representatives to support lupus research funding and the National Institutes of Health (NIH) and to co-sponsor H.R. 460, the Patients’ Access to Treatments Act (PATA), which seeks to ensure access to treatments for lupus and other chronic conditions.

Lupus activists reinforced their requests when they presented the National Lupus Research Petition with more than 30,000 signatures calling upon Congress to expand the research effort on lupus. In addition, lupus activists also came out in force online generating more than 3,500 e-mails and phone calls to Congress.

What is even more exciting is lupus activists were heard! On July 11, the Senate Appropriations Committee approved a draft of the fiscal year (FY) 2014 Labor-Health and Human Services-Education appropriations bill giving a boost in funding to the NIH. And while the FY 14 Labor-HHS bill has a long and difficult journey ahead, the draft measure demonstrated great support for lupus research funding and federal lupus programs. In addition since June 25, 13 Representatives have agreed to co-sponsor H.R. 460 (click here to see a full list of co-sponsors) bringing the total number of co-sponsors to 66.

The Foundation leads the fight to secure more funding for lupus research and lupus programs, from Capitol Hill to State Houses across the nation. We had an amazing day on Capitol Hill, but the success of advocacy is not measure on one day. To be truly effective, lupus activists must be engaged year round in communicating with their members of Congress on the importance of lupus research funding and on access to treatments.

Help us keep up the momentum to educate Congress on the urgent need to provide more resources for lupus research and access to lupus treatments. Congressman McKinley (R-WV), the sponsor of H.R. 460 and champion, is pushing us to reach 100 co-sponsors by this fall, and we need your help to get there! Please take a moment to send your Representative an e-mail today asking them to co-sponsor H.R. 460. Help us solve the cruel mystery of this unpredictable and devastating disease!