Lupus Advocates’ Goals Realized in Passage of Congressional Omnibus Bill; Signed by President
New York and Chicago based Lupus Research Institute (LRI) says its supporters and others have much to celebrate in a 2015 Omnibus Appropriations Bill passed in the House and Senate and signed into law by President Obama in mid-December.
“We are proud that the strong presence of LRI patient advocates on the Hill for well over a decade continues to bring the nation’s attention to lupus,” the LRI says in a release. “This Bill demonstrates that advocacy works — the lupus community has been heard and Congress responded to our call with action. We are very excited by the passage of this important legislation!”
The nonprofit organization, which is solely dedicated to novel research on lupus,reports that the new legislation provides for the following:
– The National Institutes of Health (NIH) to receive the full increase the LRI and other lupus advocates had requested — $2 billion to advance biomedical research, for a total funding level of $32 billion in 2016.
– $2 million allotted to advance the Lupus Initiative, a lupus care provider education program conceived by the LRI and the federal government to address racial disparities in lupus diagnosis and care. Women of color are statistically two to three times more likely to develop Lupus than Caucasians.
– The LRI says half of this funding will go to launch a new effort for ensuring that minorities are proportionately represented in clinical trials and at the LRI’s request, involving lupus stakeholders in the program’s design and implementation.
– The Department of Defense research program again includes lupus as a designated disease covered by the proposed $278.7 million budget.
– Six million dollars budgeted for the Lupus Patient Registry at the Centers for Disease Control and Prevention.
Lupus (Systemic Lupus Erythematosus or SLE) is a severe, progressively disabling systemic and chronic autoimmune disorder of unknown etiology in which various cell types and immunological pathways become dysregulated, allowing the immune system to go awry and dysfunctionally produce antibodies to cells within the body that attack and destroy healthy tissue — causing pain, swelling and inflammation, and damage to joints, skin, blood, heart, the hematological system, brain, kidneys, lungs, bones, and nervous system.
Signs and symptoms that have been associated with systemic lupus include:
- Painful or swollen joints
- Fingertips and/or toes become pale or purple from the cold or stress
- Sores in the mouth or nose
- Low blood count
- Red rash or color change on the face, across the cheek or bridge of nose
- Unexplained fever for several days
- Chest pain associated with breathing
- Protein in the urine
- Extreme fatigue — feeling tired all the time
- Sensitivity to the sun
- Depression, trouble thinking, and/or memory problems
- Unusual hair loss, mainly on the scalp
More than 90% of lupus sufferers are women, primarily of childbearing age (ie: between 15 and 44). Women of racial minorities are statistically two to three times more likely to develop lupus than caucasians, males, children, and teenagers, but people of all races and ethnic groups can develop the disorder, which can progress into severe complications that make aggressive therapies obligatory. Lupus risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
The Lupus Research Institute estimates that at least 1.5 million Americans have Lupus, representing a huge unmet medical need, with only one new Lupus treatment approved by the FDA in the past 50 years — Benlysta (belimumab). Co-developed with Human Genome Sciences and GlaxoSmithKline and approved in 2011, Belimumab is an antibody that interferes with the immune system’s assault by binding to and inhibiting a protein called the ‘B-lymphocyte stimulator’ (BLyS). Blocking BLyS is thought to cause the immune system’s antibody-producing B cells to self-destruct, thereby reducing the body’s ability to attack its own tissues.
“We believe that innovative research is the key to finding safer and more effective treatments and a cure for lupus,” says the LRI in a statement. “Our results indicate we’re on the right track. With our bold approach and rigorous standards, we5re making the breakthroughs that spell compelling new hope for the 1.5 million Americans, and the millions more worldwide, who suffer from this devastating autoimmune illness.”
Rapid Pace of Scientific Progress In Labs Needs Translation To Clinical Trials
The LRI, established in 2000, claims to now have the largest number and widest range of lupus research investigations nationwide, with LRI scientists at 61 academic medical centers across 22 states. The organization has awarded $40 million to 125 novel ideas in lupus.
They note that breakthroughs have been achieved in understanding the genetics of lupus; why and how certain organs get attacked in the brain, cardiovascular system, kidneys, and skin, basic mistakes in the autoimmune response, biomarkers of lupus development and flare, and say they’ve shaken up the field and are changing the very course of lupus research, crediting their successes not only to their unique approach, but to the LRI’s leadership and distinguished scientific advisors, who oversee rigorous peer review of grant proposals.
However, these advances in scientific understanding have not yet translated from discovery in the laboratory to safer and more effective lupus treatments, with more clinical trials and trial participants needed. To further that objective, the LRI has launched http://www.LupusTrials.org as a catalyst to get more people involved.
The Lupus Research Institute