A Lupus Advocate Takes Her Family`s Voice to The Hill
On March 18th 2013, my husband, children and I, went to Washington DC for the LRI National Coalition`s Annual Patient Advocacy Day. The first day we met with other lupus patients from all across the country and attended seminars led by top researchers in the field. Some of the topics discussed were lupus and its impact on patients, the importance of research and development of new treatments and health and racial disparities in lupus.
The next day it was off to Capitol Hill where we met with congressional aides from the offices of Senator Gillibrand (D-NY), Representative Steve Israel (D-NY), and Representative Peter King (R-NY).
Our goals were:
1. To get congressional support of The Lupus Initiative. This funding would provide nationwide lupus education programs for healthcare professionals.
2. To Increase funding for biomedical research at the National Institute of Health.
3. To get our congressional leaders to join the Lupus Caucus.
The experience was very educational. My three kids attended the advocacy day with me and they learned a lot about how our government works. We all got to tell our story about how lupus affects our entire family. It wasn’t as intimidating as I thought it would be. This experience reinforced the importance of being a patient advocate. I look forward to going to Washington again next year.