As the only organization solely dedicated to funding the most novel, creative new science in lupus and autoimmunity, the LRI has the unique privilege of witnessing the progression of its innovative research from inception through its evolution to improving patient care. Important fundamental discoveries from two LRI-funded studies were recently shared with the scientific community through publication in highly-prestigious peer-reviewed journals to help advance the field of lupus research.
What first triggers the lupus immune system to turn on the body’s own cells and tissues?Daniel Stetson, PhD (University of Washington, Seattle) is exploring his theory that lupus begins when cells mistake their own genetic material (DNA) for a virus and alert the immune system to attack it. His latest findings published in Immunity show how this happens in mice with autoimmune disease. Although at an early stage, this research could lead to new approaches to treat or even prevent lupus.
Why are people with lupus 50 times more likely to have heart disease than the average person?Steven Bensinger, VMD, PhD (University of California, Los Angeles) has shown that a protein (liver-X-receptor) best known for controlling cholesterol-levels is also essential to prevent lupus in mice. So defects in this protein could perhaps cause lupus and, at the same time, increase a patient’s risk of cardiovascular disease. Dr. Bensinger has recently discovered an unexpected role for liver-x-receptor proteins in preventing an excess accumulation of cells that cause inflammation in tissues. These findings, published in the Journal of Clinical Investigation, help to explain how liver x receptor keeps autoimmune disease at bay – insight that could inform the development of new lupus therapies.
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A new survey conducted by BioTrends Research Group finds that approximately one-third of lupus patients think many of the doctors/healthcare providers they consulted were not well-educated on how to diagnose and treat lupus and think it took too long to diagnose their condition. Two-thirds of lupus patients reported their doctor did not automatically connect their symptoms with lupus, and half were initially diagnosed with a different condition.
From the recent PatientTrends®: Lupus U.S.report of approximately 250 online patient surveys, these findings provide further affirmation of the need for the new federal program conceived by the Lupus Research Institute (LRI) in collaboration with the federal government. The Lupus Initiative is designed to provide healthcare professionals, particularly those in underserved communities, with the appropriate education and training to diagnose and treat lupus promptly.
A federal spending bill for fiscal 2013 approved today by the U.S. Senate Appropriations Committee provides $1 million to continue a signature federal lupus provider education program conceived by the Lupus Research Institute (LRI) in collaboration with the federal government. If enacted, this funding would bring the total allocated to this nationwide effort by the Department of Health and Human Services to $5.6 million.
The Senate Labor, Health and Human Services and Education appropriations bill allocates 2013 funding to continue the current federal lupus education initiative coordinated by the Office of Minority Health, Office of Women’s Health and the U.S. Surgeon General. The Lupus Initiative is designed to alleviate racial and health disparities by providing healthcare professionals, particularly those in underserved communities, with the appropriate education and training to diagnose and treat lupus promptly.
Members of the Senate and House appropriations committees will negotiate a final conference committee bill later in the fall to set the ultimate funding levels for 2013.
Report language accompanying the Senate bill emphasizes the critical need for improved lupus diagnosis and treatment: “The Committee recommendation includes $1,000,000 to continue the national health education program on lupus for healthcare providers, with the goal of improving diagnosis for those with lupus and reducing health disparities. This program is intended to engage health care providers, educators, and schools of health professions in working together to improve lupus diagnosis and treatment through education.”
“The Lupus Research Institute and its National Coalition of patients and families have walked the halls of Congress for years to draw national attention to lupus as a devastating disease that strikes primarily young women and particularly minority women,” noted CEO Margaret Dowd. “We thank the entire Appropriations Committee and in particular Senator Frank Lautenberg (D-NJ) the lead champion for this effort, as well as Labor-HHS Subcommittee Chairman Tom Harkin (D-IA) and Ranking Member Richard Shelby (R-AL) for their unflagging support of lupus patients, This bill has tremendous implications because when healthcare professionals are trained to recognize lupus, treatment can begin sooner in the disease process, lowering the risk of serious complications. The attention paid to lupus among clinicians and the public also increases interest in researching new treatments by scientists throughout the world.”
Affecting more than 1.5 million Americans, lupus is a chronic, complex and prevalent autoimmune disease, in which the body’s immune system creates antibodies that can attack any organ or tissue — the kidneys, brain, heart, lungs, blood, skin, and joints. Nine out of ten lupus sufferers are women, mostly young women between the ages of 15 to 44. Women of color are two to three times at greater risk than Caucasians. Lupus can take months and even years to be treated appropriately because its symptoms often mimic other diseases and conditions, and there is no one test for definite diagnosis. This Senate bill strongly addresses that problem by supporting training for healthcare professionals at every level on the front lines of care to recognize, diagnose and treat lupus.
NEW YORK, NY – June 28. The Lupus Research Institute (LRI) is strongly encouraged with today’s bipartisan U.S. Supreme Court ruling upholding virtually the entire Patient Protection and Affordable Care Act signed into law by President Barack Obama in 2010.
This historic decision is greatly welcomed news for the 1.5 million Americans living with lupus. In upholding the Act, the Court supported principles the LRI and its National Coalition of patient organizations had successfully advocated for inclusion to ensure that people with chronic diseases such as lupus are protected. The Supreme Court ruling maintains the following four key principles so critical to people with lupus and other chronic diseases:
“With so much at stake for lupus patients, so many are breathing a sigh of relief with this Supreme Court ruling,” said Margaret Dowd, President and CEO of LRI. “The ability to buy insurance regardless of preexisting conditions is a critically important legal right for all of us – but for people with lupus it’s truly a life and death issue. The current provision eliminating lifetime caps on insurance benefits is another pillar of health care reform that is dramatically increasing treatment options for many lupus patients.”
To learn more about the Affordable Healthcare Act, visit www.healthcare.gov .
Lupus is a disease that a majority of us have heard of but don’t know much about. In addition, it is very complex and often difficult to diagnose because of its shared symptoms with other diseases. So what is this perplexing disease?
Lupus is a chronic autoimmune disease in which the immune system not only attacks invaders, but healthy tissue as well. This results in inflammation, pain and damage to various parts of the body. According to lupus research, an estimated 1.5 million Americans and at least 5 million people worldwide suffer from the disease.
There is no single test for lupus, but a combination of lab tests and a clinical assessment will help lead to a diagnosis.