The New York and Chicago based non-profit Lupus Research Institute (LRI) Coalition, along with lupus patients nationwide are hopeful that the year-end Congressional Fiscal 2015 Consolidated and Further Continuing Appropriations Act will authorize support for several lupus research and professional education programs after the organization’s year-log advocacy.
An LRI release says that If the enabling legislation is enacted, an additional $2 million in funding will be allocated to help advance the Lupus Initiative’s collaboration with the U.S. government on a LRI-conceived national healthcare provider education program. That additional $2 million appropriation will bring cumulative support to $8.6 million over the past five years and help address a critical need for improved lupus education among healthcare professionals, especially those active in working with underserved demographic groups. Managed by the American College of Rheumatology, the Lupus Initiative, Established in 2000, is a joint program of the Office of Minority Health, the Office of Women’s Health, and the U.S. Surgeon General’s office with the objective of improving diagnosis and toward reducing health disparities.
“The Lupus Initiative has made significant headway in one year, but theres more work ahead to ensure that every healthcare professional considers lupus when faced with a patient describing vague symptoms like severe fatigue and joint pain,” says LRI CEO Margaret Dowd in a release. “Our LRI Coalition of patient advocates thanks Congress for recognizing the need for additional funds to expand our reach among medical students and front-line providers most likely to encounter undiagnosed cases of lupus.”
Advancing Research for Better Lupus Treatment
The Congressional bill also acknowledges the importance of support for the nation’s biomedical research program, with $30.084 billion allotted to the National Institutes of Health’s budget, representing an approximately $150 million increase above corresponding 2014 funding. The bill also contains a directive for the NIH to prepare a lupus research update reporting plans for 2015. And additional to a total of $247.5 million allocated for the Department of Defense Peer Reviewed Medical Research Program, the bill also responds to a call sounded by LRI advocates in 2014 for lupus’s continued inclusion on the roster of the diseases deemed eligible for funding.
“Congress heard and responded to requests from the LRI and many organizations to bolster our nations investment in biomedical research,” Ms. Dowd observes. “We are very proud of what all the visits, letters and emails to federal legislators from lupus patients throughout the country have accomplished.”
Systemic lupus erythematosus is a chronic and often disabling autoimmune disease in which the body’s immune system dysfunctionally attacks healthy tissue, potentially affecting skin, joints, kidneys, the brain, and other organs. It is estimated that more than 1.5 million Americans have lupus, most of them young women of childbearing age who suffer from symptoms such as intense fatigue and exhaustion, joint pains, thinking and memory problems, and skin rashes. The LRI notes that lupus manifestations tend to be idiosyncratic, with no two cases exactly alike. While some people with lupus will develop kidney problems, others may be afflicted with premature heart disease and others yet will suffer from strokes or develop lung inflammations.
The first new lupus therapy in 50 years — Benlysta (belimumab) Co-developed with Human Genome Sciences and GlaxoSmithKline — was approved in 2011. Belimumab is an antibody that interferes with a dysfunctioning immune system’s attacks on body tissues by binding to and inhibiting a protein called ‘B-lymphocyte stimulator’ (BLyS). Blocking BLyS is thought to induce the immune system’s antibody-producing B cells to self-destruct, reducing the body’s ability to attack its own tissues.
Lupus Research Institute and other scientists continue to investigate lupus, and are coming closer to finding answers. The LRI notes that just 20 years ago, only 40 percent of people with lupus were expected to live more than three years following diagnosis. However, with earlier diagnosis, the latest therapies, and careful monitoring, today most people with lupus can anticipate living a normal lifespan.
Since 2000, the Lupus Research Institute has awarded $40 million in funding to 125 novel ideas for treating lupus, and to translate discovery in the laboratory to safer and more effective lupus therapies.
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The Lupus Research Institute