- Lupus is diagnosed in about 16,000 people each year.
- An estimated 204,000 people have SLE in the U.S. What’s more, 9 in 10 adults with lupus are women, and most people develop lupus between the ages of 15 and 44.
- It’s also two to three times more prevalent (and more severe) among Black and American Indian/Alaskan Native women than white women.
Because over 200,000 Americans suffer from SLE, lupus might be officially reclassified as a rare disease under the U.S. Rare Diseases Act. This shift could make drug development easier for pharmaceutical companies seeking potential lupus therapies. A rare-disease classification would decrease the number of study participants needed for testing new treatments and shaping the design of clinical trials.
Lupus in Children
Lupus in children tends to be more aggressive than in adults, says Dr. Pascual. The exact reasons for this are not understood. One theory is that people are born with a genetic susceptibility to the disease that may be triggered by environmental factors such as a virus. “Children with the condition may have inherited a more complex set of predisposing genes,” she says. But this theory has yet to be proved.
Children undergo the same diagnostic testing as adults, and treatments are similar. “There are few clinical trials in children, so there is no option but to treat children based on the adult experience. We use the same drugs,” says Pascual, with doses adjusted according to the child’s weight.
Doctors should closely monitor children for drug side effects. Steroids, for example, can delay growth and cause high blood pressure. Chemotherapy can make children more prone to infections, says Pascual. Fortunately, life expectancy in pediatric lupus has improved dramatically in the last 15 years, she says.
Ongoing research continually investigates new treatments for lupus, develops insights into better disease management, and examines the causes of the disease. A particular recent area of focus is the potential link between gut health and the development of lupus and disease activity.
BIPOC and Lupus
The data from Dr. Somers’s group was a first step into gathering more reliable, detailed data on the issue, using a standardized way of defining cases.
“It’s important to have a firm understanding of baseline rates of this disease to flag trends in the population and how they’re changing over time,” Somers said.
The research also quantified, for the first time, the prevalence of lupus in men with direct comparison between ethnic groups. Lupus rates are highest in Black men, followed by Hispanic, Asian, and white men.
Somers’s group, funded by the Centers for Disease Control and Prevention, continues its work by looking at why there are such stark disparities in lupus between genders and race. Using the data from the five registries, the researchers are also looking at patients’ experiences with lupus and how the disease evolves.
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