Lupus Unknown to Most Americans, Despite Widespread Prevalence
/By Pat Anson
About 1.5 million Americans suffer from lupus, a disabling autoimmune condition that causes extreme fatigue, cognitive issues and damage to tissues and joints. Although lupus is a leading cause of death for young women, many of them Black or Hispanic, most Americans know little about the disease.
A new survey commissioned by the Lupus Foundation of America found that over half of American adults (53%) know very little about the disease or nothing at all --- even though 42% say they personally know someone living with lupus. The survey findings are being released to coincide with Lupus Awareness Month in May.
"The survey is a sobering reminder that lupus remains a misunderstood and underestimated chronic condition," Louise Vetter, President & CEO of the Lupus Foundation of America, said in a press release. "Lupus Awareness Month is a call to action because we know that awareness is the first step toward deeper understanding, stronger doctor-patient engagement, and healthier lives."
One of the reasons lupus is so poorly understood is that it is difficult to diagnose. The symptoms vary from person-to-person, can come and go or change over time, and are often misdiagnosed. On average, it takes nearly six years for people to be diagnosed after they first notice lupus symptoms.
About 43% of survey respondents said they did not know lupus is an autoimmune disease, 44% did not know lupus can impact any organ in the body, and more than a third (38%) were not aware that lupus can be fatal.
While lupus primarily impacts younger women aged 15-44, nearly half of Americans (40%) said they did not know that children can also develop the disease. Up to 20% of people with lupus are diagnosed as children, and pediatric onset of the disease tends to be more severe and aggressive than in adults.
There are no known causes or cure for lupus, and the FDA has approved only three medications that were specifically developed to treat lupus. Several non-lupus medications, originally developed to treat malaria or cancer, are being repurposed to treat lupus. On average, people with lupus take an average of nearly eight prescription medications to manage their symptoms.
The Lupus Foundation says there has been significant progress in developing new lupus treatments in the last five years, but concern is growing that cuts in federal health research will stifle further progress.
A continuing resolution passed by Congress in March would eliminate funding for the Lupus Research Program at the Department of Defense. The Department of Health and Human Services would also lose about a third of its funding under a proposed 2026 budget. That would coincide with a major reorganization of the CDC and the HHS Office of Minority Health, which threatens to eliminate two additional lupus programs.
“The Lupus Foundation of America is profoundly concerned by the reorganization and significant staff reductions taking place at the U.S. Department of Health and Human Services (HHS) in addition to cuts that already have been made to the Lupus Research Program at the Department of Defense (DoD). These changes threaten to disrupt and delay vital lupus programs and negatively impact lupus research, drug development, and public health initiatives,” the foundation said in a statement.
The foundation will hold its annual National Lupus Advocacy Summit on May 4-6 in Washington DC, which you can watch via livestream.
World Lupus Day is on May 10, with a call to action for patients and advocates to wear purple and light significant landmarks with the color purple.
