Advocacy can mean different things to different people. Some seek to make changes in policy and funding at state and federal levels by helping Congress and government agencies better understand what it means to live with lupus. For others, advocacy is a way to take action with respect to their own health.
Regardless of the motive, one thing is certain — the lupus community is highly motivated, extremely active, and tremendously successful! On a national level, our advocacy with Congress has resulted in an increased budget from the federal government for medical research, dedicated funds for lupus research specifically, and programs to address racial disparities in healthcare. On a state level, advocates have been very effective in gaining awareness for what remains a little-known disease.
Our hard work is being rewarded. The Lupus Research Alliance — with lupus advocates across the country — has fought for lupus research to be recognized as a federal priority, and we are seeing the fruits of our labor.
Strongly supported by our advocacy community, the National Institutes of Health (NIH) Action Plan for Lupus Research was updated in 2016 under the direction of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). This recent report updated the previous NIH strategic research plan driven by Lupus Research Alliance advocates.
Originally published in 2007, The Future Directions of Lupus Research guided the nation’s investment in lupus research for nearly a decade.
“Advocacy helped motivate NIAMS to initiate the 2007 plan, which has evolved into the current comprehensive roadmap for the nation’s investment in lupus research going forward,” said Diane Gross, National Director of Advocacy and Programs at the Lupus Research Alliance. “This effort was designed to dramatically improve our understanding of lupus and set priorities for the direction of lupus scientific exploration.”
Another series of successes — in 2004, our advocates were able to get lupus included as one of many diseases eligible for funding through the Department of Defense Congressionally Directed Medical Research Programs (CDMRP). Our persistence has maintained that designation every year since. But even more impressive and important, our advocacy resulted in a new program created in 2017 that designates funding just for lupus — the Lupus Research Program allocated $5 million in its first year under the CDMRP operated by the Army Medical Research and Materiel Command in Ft. Detrick, MD.
Based on the critical need for better treatments and the overwhelming response to the first call for grant proposals, our advocates effectively secured an additional $5 million to continue the Lupus Research Program in 2018. Most recently – the federal spending budget allocated $5 million for Year 3 in Fiscal Year 2019! In addition, our yearly requests have elicited billions for biomedical research funded by the NIH.