Cases of Lupus Expected to Grow
Though descriptions of its symptoms date back centuries, lupus — the autoimmune disease that primarily affects women of childbearing age — continues to confound clinicians and researchers. Unlike, say, the flu or COVID-19, where a viral culprit is to blame, the cause (or causes) of lupus remains elusive, even as science uncovers potential therapy targets.
“We know some people are genetically predisposed, and environmental factors can trigger the disease,” says Maria F. Carpintero, M.D., a rheumatologist with the University of Miami Health System. “But we don’t know the trigger, whether it’s bacterial, viral, hormonal, or the result of some medications or chemicals.”
About 1.5 million Americans, and at least five million people worldwide, have a form of lupus, according to the Lupus Foundation of America.
Of those, 90% are women, usually between the age of 15 to 44. (Children, men, and teenagers can also develop the condition.) The U.S. Centers for Disease Control and Prevention estimates that there are 16,000 new cases diagnosed every year.
However, those numbers are likely to rise as the demographics of the U.S change. That’s because lupus disproportionately affects Hispanics, Asians, and African-Americans – precisely the groups with the most population growth. A new study that tracked cases during a 40-year period in a Minnesota county underscored this reality.
As that county’s racial and ethnic mix markedly changed, the per capita case numbers of lupus doubled.
The study authors, who published in the Annals of the Rheumatic Diseases, say that this has severe implications for the future, as the U.S. Census Bureau has projected that non-white Americans will become a majority in the next two decades.
The jump in incidence rate doesn’t surprise Dr. Carpintero. Her practice in South Florida, known for its ethnically diverse population, reflects that. “We know that Hispanic people are more likely to develop lupus,” she says.
Certain ethnic groups share genes that may increase the risk of having lupus in those populations.Dr. Carpintero
And it’s not just Hispanics. She also sees a fair number of African-Americans and Haitians in her office.
Other studies bear out the disproportionate burden of lupus on minority populations. Lupus is two to three times more prevalent among African American, Hispanic, Asian American, and Native American women than among White women.
More troubling, “we see not only more cases but also more severe disease among these groups,” Dr. Carpintero adds.
This is true not just in Miami but around the country.
A recent longitudinal study out of California found that non-white groups suffer from more serious disease symptoms, including organ damage. While 30% of white patients developed renal disease in the course of the disease, the comparable numbers were considerably higher for minorities: 50% for Black patients, almost 70% for Asians, and 72% for Hispanics.
This pattern held for lupus-caused renal, neurologic, cardiovascular, and hematologic symptoms. In cases with multi-organ damage, for instance, about 35% of white patients were affected late in the disease, but more than 60% of Asian and Hispanic participants were.
Part of the disease progression may be caused by genetics, but “we also have to take into account that these groups have less access to care and are also diagnosed at a later stage,” Dr. Carpintero explains. “By the time we see them, the disease has caused organ damage.”
Diagnosing the disease can also be challenging.
Lupus symptoms imitate those of other conditions, and these can come and go and change over time.
In some cases, it takes years and several doctor visits before the condition is accurately identified. Lupus may affect different parts of the body, further complicating the diagnostic process. Some people may show signs on the skin, while others may display symptoms in other organs.
The most common lupus symptoms include:
- pain or swelling in the joints
- headaches, extreme fatigue
- low fevers
- sensitivity to light
- chest pain when taking deep breaths
Some patients also report a rash on the cheeks and nose, sores in the mouth, and hair loss.
Dr. Carpintero and her colleagues use a battery of blood and urine tests to confirm clinical suspicions. Those results also help guide rheumatologists in their treatment of the disease. But even then, patients often react differently to the same therapies.
Sometimes the disease doesn’t respond to the treatment in the way you expect or want.Dr. Carpintero
Treatment usually involves immunosuppressant medications depending on how far the disease has developed. The antimalarial drug hydroxychloroquine — made famous during the early months of COVID — also helps decrease lupus flare-ups. In addition, Dr. Carpintero says different pharmacological treatments will be prescribed depending on which organs are affected.
There is no cure for this debilitating disease yet, but Dr. Carpintero points out that much progress has been made in the past few decades. In the 1950s, there was a 90% mortality rate. Now 90% of patients make it to the 10-year mark.
Two new drugs have been approved for lupus in the past decade, and several others are in the clinical trial pipeline. These target inflammatory markers unique to lupus and therefore are “very promising.”
“We’ve had a lot of progress, but there’s still more work to do,” she adds.
Ana Veciana-Suarez, Guest Columnist
Ana is a regular contributor to the University of Miami Health System. She is a renowned journalist and author, who has worked at The Miami Herald, The Miami News, and The Palm Beach Post. Visit her website at anavecianasuarez.com or follow @AnaVeciana on Twitter.