More Asian and Hispanic people with lupus die prematurely than white patients, a new study reveals.
Death rates in San Francisco were nearly six times higher than expected among Hispanic patients with lupus and four times higher than expected among Asian women with lupus, the researchers found.
The higher death rate among racial and ethnic minority groups might result from more severe cases of the autoimmune disease or less access to care, said researcher Dr. Jinoos Yazdany. She is chief of rheumatology at Zuckerberg San Francisco General Hospital.
"It is very important that clinicians maintain a high index of suspicion for lupus in these groups in the primary care setting and refer patients to rheumatologists," Yazdany said. "Access to high-quality specialty care is important to improve the outcomes of this disease."
The study looked at more than 800 people with lupus in San Francisco from 2007 to 2009, as well as national death listings through 2017.
Just over 200,000 Americans have systemic lupus erythematosus, and minority women are at the highest risk, the study authors noted.
In lupus, the immune system mistakenly attacks healthy tissues, especially joints and skin. The condition can be fatal, and often causes debilitating fatigue and pain that prevent nearly half of adult lupus patients from working.
Of every 100,000 people in the United States, nearly 73 had lupus, for a total of 204,295 out of a population of 330 million, recent research shows. Nine times more women than men had the disease, and rates were highest among Native American/Alaskan Native women (at 270 per 100,000). Black women had the second highest rate (231 per 100,000), followed by Hispanic women (at 121 per 100,000).
Similar racial disparities were seen among men with lupus, with American Indians/Alaskan Natives having the highest number (54 per 100,000), followed by Black men (at 27 per 100,000), according to a recent report.
While the higher death rates in African Americans with lupus had been previously described, Yazdany said her team's study is one of the first studies to compare rates among Asian and Hispanic/Latino patients with the general population.
Dr. Karen Costenbader, chair of the Medical-Scientific Advisory Council at the Lupus Foundation of America, said that the new study is significant because it shows the high death rates among people with systemic lupus.
The study showed that Black patients died about 7 years earlier than white patients, and Hispanics died nearly 10 years earlier.
"These figures are alarming and discouraging, as well," Costenbader said.
She said several factors probably underlie the disparities.
"[They] are due, to some extent, to genetic factors underlying disease severity and organ involvement, but also, and in large part, to social, cultural, educational, health care system, environmental, political and historical causes," Costenbader said. "Unfortunately, this includes ongoing systemic and institutionalized racism and barriers to access to the best medical care."
The first step to eliminating these disparities is awareness, she noted.
"But we need to do much more," Costenbader added. "We need more dedicated programs working to improve outcomes in lupus and to reduce these unacceptable disparities. We need work on many different fronts at once."
Dr. Waseem Mir, a rheumatologist at Lenox Hill Hospital in New York City, suspects that many minority patients with lupus aren't proactive about their care.
"The lack of health care education, what I've seen in my patients, is that a lot of these patients don't do follow-ups," Mir said. "They don't really take their medications, they don't really see the doctors as much and the way they should, so what happens is it leads to poor outcomes, and their health is also poor because they're not really eating well, they're not really exercising."
Solving these problems starts with the health care system and with doctors taking the time to educate their patients about the disease, he said.
Mir added that patients should be encouraged to learn about lupus and join support groups. But he also noted that many Asian and Hispanic patients have language barriers that prevent them from understanding how to take care of themselves.
Follow-up visits are particularly important, he said.
"Treatment follow-up is important just to assess the overall health of the patient and check if their disease is getting worse," Mir said.
The report was published Feb. 19 in the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.