With your help, the Lupus Research Institute (LRI) and our National Coalition of patient groups across the country effectively advocated throughout the year on behalf of the lupus community to increase research funding, alleviate healthcare disparities, and accelerate development of better treatments.
Highlights of What We Accomplished Together in 2014:
Secured allocations for lupus in the 2015 U.S. budget!
- $2 million to further the Lupus Initiative, the highly successful national healthcare provider education program founded and funded by the LRI in collaboration with the federal government to alleviate healthcare disparities in lupus. Our National Coalition has raised $8.6 million in Congressional funding to support the Lupus Initiative so medical professionals throughout the country can recognize, diagnose and treat lupus promptly and properly.
- $30.084 billion to the National Institutes of Health budget for biomedical research. Approximately 67 percent of LRI’s researchers secure grants from the NIH and other sources to expand on the work they started with an LRI Novel Research grant.
- $247.5 million for the Department of Defense Peer Reviewed Medical Research Program and continued eligibility for lupus funding. In 2014, the LRI helped secure grants totaling $3.4 million from the DOD for lupus research.
Stopped Proposed Medicare Restrictions!
- Prevented limitations to Medicare patients’ access to critical medications in collaboration with 40+ organizations nationwide.
Told the FDA Why They Must Listen to Lupus Patients
- The Food and Drug Administration is seeking the patient perspective on selected diseases, but did not include lupus in upcoming hearings. In response, the LRI submitted a formal letter and galvanized the community to deluge the FDA with email and letters explaining why lupus must be included and lupus patients must be heard!
Called for Better Access to Better Lupus Care
- Secured improvements to the Affordable Care Act as a supporter of the “I Am (Still) Essential” letter to the U.S. Secretary of Health and Human Services.
Involved the National Lupus Community
- Initiated the Legislative Action Center on the LRI website to keep the lupus community updated on relevant national issues and provide an easy-to-use tool to express the lupus perspective to local legislators.
And Going Strong!
Because of your contributions – with your voices the federal government paid attention to lupus. But with limited resources and hundreds of worthy causes clamoring for Congressional support, continued success depends on continued vigilance.
In 2015 we will continue to represent the lupus community on the Hill. We will be calling on our patients and families to add the strength of numbers with virtual advocacy through emails and phone calls to legislators. With your collective help, we will continue to ensure that healthcare professionals have the right training to diagnose and treat the disease, while researchers have the means to develop better treatments while we push ever closer to a cure.