Safeguarding Our Youth
LFA-Funded Research Improves the Outlook for Childhood Lupus
In the 1950s and ’60s, the long-term prognosis for people with lupus was not encouraging. The disease was underdiagnosed and misdiagnosed, and research was underfunded. Children, in particular, did not fare well. Delays in diagnosis led to organ damage. Doctors were reluctant to use medications and treatment regimens developed for adults, and the long-term effects of lupus and its treatments were not well understood. But in 2010, children with lupus have a much better prognosis, both short- and long-term, thanks to the persistence and ongoing commitment of the lupus community.
Bringing Down the Barriers
For more than 30 years, the Lupus Foundation of America (LFA) has supported the work of pediatric rheumatologists who are unlocking the mysteries of childhood lupus. In 2006, the LFA was granted $1 million from the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who lost his battle with lupus at age 24. The LFA used a portion of these funds to launch a pediatric lupus research program. In doing so, the LFA became the first patient advocacy organization to establish a research program dedicated specifically to the effects of lupus on children and adolescents.
Today, the Michael Jon Barlin Pediatric Lupus Research Program has become a mainstay in the LFA research portfolio as part of its prestigious national research program, Bringing Down the Barriers. In recent years, LFA’s research program has funded an increasing number of grants for pediatric lupus research.
Federal Recognition of Need for Pediatric Lupus Research
Statistics show that 15 percent to 20 percent of those with lupus are diagnosed before age 18. In the majority of these young people, lupus begins around puberty, between ages 12 and 15. As with adults, the vast majority of children affected are female. Girls are diagnosed four times as often as boys if the disease begins before age 10 and nine times more frequently when the disease starts after puberty. The signs and symptoms of lupus in childhood and adolescence are virtually identical to those of lupus in adults. Also, as with adults, the disease course is variable, with flare-ups and periods of relative disease inactivity.
In 2007, the National Institutes of Health (NIH) released the report “The Future Directions of Lupus Research.” A section dedicated to pediatric lupus states, “Because of their disease severity and young age, lupus is a particular burden for children. Thus, any research that leads to improved understanding, treatment, and quality of life in children has significant, lifelong implications.”
The report cites research highlights, which include:
- Recognition of the role that type I interferon signature and abnormal myeloid cells play in active pediatric lupus.
- The establishment of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a national network of clinician-researchers who are studying and treating young people with lupus and other childhood rheumatic diseases.
- The establishment of the APPLE trial (Atherosclerosis Prevention in Pediatric Lupus Erythematosus), in which statins—drugs used to lower low-density lipoprotein (LDL, or “bad” cholesterol levels)—are being tested for their ability to lower fat buildup (atherosclerosis) in the blood vessels of children with lupus.
A more recent CARRA effort has aimed to develop “best-care protocols” for physicians caring for children with class III/IV lupus nephritis. The LFA staff participated in an advisory capacity, providing input on quality-of-life issues from both the parents’ and children’s point of view.
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