August 9, 2018
The Lupus Research Alliance appreciates new published findings that finally document what we and the lupus community have long known only too well – lupus is a leading cause of death among women, particularly threatening the lives of our most vulnerable – children and teens. These findings propel our determination to provide the basis for real hope – vastly increased funding for the novel innovative research that a complex, devastating disease like lupus requires and deserves!
“This study confirms the well-known fact among the pediatric rheumatology community that early onset SLE is a more aggressive disease,” commented Virginia Pascual, MD, Gale and Ira Drukier Institute for Children’s Health. “In addition to the immense psychological and physical impact of developing SLE early in life, the data shows that the disease ranks among the leading causes of death especially among younger African American and Hispanic females in the U.S. Overall, the report underscores the need to better understand the factors that predispose to early disease presentation and to develop more comprehensive management approaches, including every effort to enroll younger patients in clinical trials”
“These results are startling, reminding us that lupus is a serious life-threatening disease, often affecting children more severely than adults, and that racial/ethnic disparities continue to impact these patients,” notes pediatric lupus researcher, Andrea Knight, MD, MSCE, a core faculty member at the Center for Pediatric Clinical Effectiveness (CPCE) and PolicyLab at The Children’s Hospital of Philadelphia (CHOP), and Assistant Professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine. “The burden of lupus is great – children and adults experience delays in diagnosis, have limited treatment options, and do not yet have a cure. Research is desperately needed to address these issues, and the Lupus Research Alliance has taken a leadership role in supporting pediatric lupus research.”
Just one of many Lupus Research Alliance grantees involved in pediatric research, Dr. Knight is leading a clinical study of new biomarkers (indicators to monitor disease) that can possibly shed light on why psychiatric disorders like depression are so common in kids with lupus, especially among African Americans. Other studies include investigating the underlying causes of lupus in children and tools to track its severity.
But as the Arthritis & Rheumatology study underscores, lupus still devastates and threatens too many lives. The Lupus Research Alliance is resolved to turn the statistics around by realizing our determination to free the world of lupus through the power of cutting edge science and emerging technologies. As the world’s largest private funder of lupus research worldwide, the Lupus Research Alliance has already invested over $182 million, leading the drive to new treatments, prevention and cure.