Congress Listened, Lupus Voices Heard!

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 as 40 advocates from the Lupus Research Institute (LRI) National Coalition met with 50 state and federal representatives. We knew our way around having walked these halls on behalf of lupus patients for the past five years, but this year we exceeded our goals.

Here are some visuals to give you a flavor of the day:

Coalition members with the staff of Congressman Bill Young (R-FL)

Coalition members with the staff of Congressman Bill Young (R-FL)

New LRI Board member and her daughter at their local representative’s office

LRI Board member and her daughter at their local representative’s office

Lupus LA advocates Deidre Gee, Kirsten Gee, Matt Durkan, , Bridget Hood visit with Matt Connolly, Aide to U.S. Representative Henry Waxman (D-CA)

Lupus LA advocates Deidre Gee, Kirsten Gee, Matt Durkan, Bridget Hood visit with Matt Connolly, Aide to U.S. Representative Henry Waxman (D-CA)

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.

Visit the LRI website to learn how to reach your local representatives with our united message. Here’s what we’re calling for:

1. 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. Strengthen 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. Reduce 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 our nationwide lupus education program for healthcare professionals called THE LUPUS INITIATIVE.

Overwhelmingly Positive Feedback from Participants and Presenters:

"I had a GREAT day.  It is truly remarkable how much the LRI has accomplished - and on so many fronts - that are all critical to make progress in treating and curing this disease.  I was particularly struck by presentations by LRI Board member Hope Hetherington and Coalition member Kathleen Arntsen. It was so important to highlight those fundamental issues in documenting disease and the absurd complexities of lupus health care management under our current system.  Kathleen articulated such an important point -- that we all - patients, caregivers, cure seekers (including scientists) are all stakeholders in solving the health care issues that face people with lupus, and that we're really all in it together."

"And I must say I am always in awe of the power and tirelessness of every individual I've met at the LRI -- and so many dealing with an illness that causes profound fatigue!!!"

Presenter Chris Roman, PhD, SUNY Downstate Medical Center

“I thought the LRI National Coalition Advocacy event was wonderful and there was a tremendous enthusiasm and collaborative spirit evident in the training and on Capitol Hill.  We have made great strides since the LRI Congressional Briefing and positively impacted every part of the lupus community.  We are proud to be part of this coalition and re-energized and motivated to move forward to conquer this disease together!"

Advocate, Kathleen Arntsen, Lupus Foundation of Mid & NNY

"Chelsea Whitaker and I had the privilege of joining the Lupus Research Institute's National Coalition at their Advocacy Day in Washington D.C. yesterday. Working behind the scenes as we do for our clients, it was truly inspiring to step out and witness patients, field experts, scientists, medical providers, advocates, and activists come together for a day of updates on nationwide programs in preparation for a day of meetings on the Hill. With the new Congressional Lupus Caucus and $1 million designated for lupus medical education, they have much to celebrate as well as much still to work for."

Presenter Melissa Lee, SankyNet