When LRI 2012 Advocacy Day Brought Lupus Issues to the Hill
The 1.5 million suffering with lupus were heard loud and clear on Capitol Hill yesterday. Lupus LA was among the 40 advocates from the Lupus Research Institute (LRI) National Coalition that converged on Capitol Hill for appointments with more than 50 state and federal representatives in Washington, DC.
Lupus LA had extremely worthwhile meetings with several Congressional representatives from California including Representatives Henry Waxman, Tom McClintock and Lucille Roybal-Allard and Senator Barbara Boxer.
Senator Boxer and Congressman Waxman indicated that they are both very supportive of our requests, particularly with regard to increased support for the National Institutes of Health (NIH). Senator Boxer informed us that she is issuing a “Dear Colleague” letter to advocate for support of increased NIH funding in the new budget. Congresswoman Roybal-Allard, a long-time ally of Lupus LA, pledged to continue her efforts to support increased federal funding for lupus, especially for the Health and Human Services Office of Minority Health in an effort to reduce health disparities among those affected by lupus.
You may not have been with us in person, but everyone touched by lupus was there in spirit. We were proud to give voice on the Hill to people with lupus, and gratified that we were heard. But now we need your help to ensure that Congress keeps listening.
Lupus LA advocates Deidre Gee, Kirsten Gee, Matt Durkan, Bridget Hood visit with Matt Connolly, Aide to U.S. Representative Henry Waxman (D-CA)
Kristen Glen, Aide to U.S. Representative Tom McClintock (R-CA) meets with Lupus LA advocates Matt Durkan, Deidre Gee, Kirsten Gee
Visit the LRI website to learn how to reach your local representatives with our united message. Here’s what we’re calling for:
1. All Representatives to Join New Congressional Lupus Caucus
WE STRONGLY URGE YOU, OUR REPRESENTATIVES ON THE HILL, TO JOIN THE NEW CONGRESSIONAL LUPUS CAUCUS as an important step in raising awareness of lupus among patients, healthcare professionals and researchers.
2. Strengthened Biomedical Research at the NIH
The LRI National Coalition urges Congress to strengthen the nation’s biomedical research enterprise by INCREASING FUNDING LEVEL TO AT LEAST $32 BILLION IN FISCAL YEAR 2013.
3. Reduced Health Disparities in Lupus
The LRI National Coalition requests that Congress provide the HHS Office of Minority Health budget WITH $2 MILLION IN THE FISCAL YEAR 2013 Labor/HHS Appropriations Bill to continue a new nationwide lupus education program for healthcare professionals called THE LUPUS INITIATIVE.
Following is a summary of insights from legislative and advocacy advisors on how we can advocate for people with lupus most effectively.
When you visit, write or speak with your legislators, make the issues come alive by painting a verbal picture of a person struggling with lupus. Share why you are passionate about lupus and help him/ her see life through the perspective of a lupus patient.
Keep it short. If you’re meeting in person, review what you want to convey in advance to make the most of limited time. If writing, brevity will help keep your reader’s attention.
Follow up with those you have reached with a thank you note. Every now and then, write to share relevant local news and provide updates on your personal struggles with lupus.
Use the internet to enlist your friends, family and colleagues in contacting their legislators. “Like” the LRI Facebook page and link to the LRI website on your Facebook page. Tweet a request to your own followers to visit lupusresearchinstitute.org about alerting local representatives to key issues for people with lupus.
