THURSDAY, May 16, 2019 — Lupus, a chronic autoimmune disease that attacks the skin, joints and organs, can shorten the lives of its victims, but new research shows it can shorten the lives of black patients the most.
Health data from two counties in Georgia found that black people with lupus have an average age at death of about 52. Meanwhile, white people with the disease live an average of around 65 years.
For comparison, the overall average age of death in the United States is nearly 79, according to the U.S. Centers for Disease Control and Prevention.
“Lupus is never easy,” said study author Dr. S. Sam Lim, clinical director of rheumatology at Emory University in Atlanta. “It’s a complex mix of a lot of issues.”
He added that he suspects that there are likely biological and socioeconomic factors to blame for the racial disparity in death rates.
Lupus tends to affect younger people, 90% of those with the disease are women, and the rate in black women is three times higher than it is in white women, he said.
To make matters worse, there’s often a delay in diagnosis that can affect the long-term prognosis. “Doctors have to be thinking of lupus, especially when seeing a young black woman who’s not getting better,” Lim said.
Even after people are diagnosed with the disease, there are still a number of hurdles to clear.
“Lupus is often diagnosed in young adults that are just entering the workforce, continuing their education and starting families. Lupus is a chronic disease that’s complicated and requires a lot of doctor visits and missed work. If you’re juggling a new job and family, how do you do that? Something has to give,” Lim explained.
Adding to that pressure, lupus can cause serious fatigue and difficulties with thinking and memory. All of these issues often lead to job loss, and with that job loss comes the loss of health care.
“It’s a whirlpool that pulls in the socially vulnerable and pushes them down the socioeconomic ladder,” Lim said. And that can lead to less access to medical care and medications.
In the study, the researchers identified 1,335 people with lupus. Almost 90% were women and 77% were black.
Between 2002 and 2016, 400 of these people died, a rate three times higher than what would be expected in the general population. The death rates for whites was 2.4 times higher than expected, while the death rate for blacks was 3.3 times higher, the study found.
Early deaths in lupus are often the result of infections, heart disease and stroke, according to the researchers. Some of the medications for lupus suppress the immune system, which can lead to serious infections, while the risk of heart disease and stroke may be higher because of the inflammation associated with lupus, Lim suggested.
He also noted that doctors may frequently prescribe prednisone for patients, but this drug can have significant side effects, particularly when overused. “Steroid use is associated with poor outcomes,” he said.
The findings were published recently in the CDC publication Morbidity and Mortality Weekly Report.
Dr. Anca Askanase, director of the lupus center at New York-Presbyterian/Columbia University Irving Medical Center in New York City, said the study is “a call to action. We need to understand these differences in a more profound way. Right now, we don’t have enough data to know how to do better, and that’s frustrating for patients, and as a doctor.”
Askanase, who wasn’t involved with the study, said that lupus tends to be diagnosed earlier in black people and is more aggressive.
“The disease acts differently in black people, and socioeconomic and demographic factors may be making the impact even deeper,” she said, adding that it’s important to learn if there are any significant differences in Hispanic or Asian people with lupus.
Askanase said there’s a big need for more medications to treat lupus. “We’ve only had one new drug approved for lupus in the past 60 years, and that was in 2011. There’s a need for more therapeutic options.”