The High Cost of Living with Lupus

How the costs of living with lupus add up

“If you have to get admitted to the hospital, go to the emergency room, get all of the testing that you need to have done when you have lupus — because you're really supposed to be getting your blood and urine tested every three to six months — those costs add up over time,” said Jessica Williams, M.D., MPH, assistant professor of medicine in the Division of Rheumatology at the Emory University School of Medicine in Atlanta, Georgia.

The financial burden of managing lupus can be very different based on how severe your disease is, according to a study published in The Journal of Rheumatology. Researchers found that patients with severe lupus faced healthcare costs of $52,951 annually — while mild cases cost an average of $21,052. These expenses also include indirect costs, such as lost wages. A 2021 study published in Lupus Science & Medicine had similar findings, putting the costs at $68,260 for severe cases and $13,415 for mild cases

The study also revealed that even before diagnosis, patients who would eventually develop severe lupus already had significantly higher healthcare costs.

The economic costs and disparities of lupus

The financial strain is particularly tough for women, who account for 9 out of 10 lupus cases. Many women with lupus are in their reproductive years, a time when flares from the disease can interfere with their career and financial stability. One study found that being a female with lupus was associated with unfavorable work outcomes, which include lost days of work and quitting work for health-related reasons. Symptoms like extreme fatigue, pain and brain fog can affect patients’ ability to do their jobs well, and more severe flares can lead them to reduce their working hours, switch to less demanding roles or even leave the workforce entirely.

“Women with lupus are often just financially devastated, and with our healthcare system being tied to employment the way it is, it can be impoverishing,” said Parthasarathi, whose book, “Lupus: In the Jaws of the Wolf,” is a personal guide to living with the disease and navigating the healthcare system.

Lupus also worsens economic inequalities for women of color. "We know that lupus is more common in racial and ethnic minority patients of all backgrounds,” said Williams, who was the lead researcher on a 2023 study published in Rheumatology that looked at demographic disparities in health outcomes for lupus patients.

Black and Hispanic women, in particular, are more likely to develop lupus and experience more severe forms of the disease, including complications like lupus nephritis, which can lead to kidney failure and the need for dialysis — a potentially huge expense. Williams highlights that these groups are not only at higher risk for developing lupus but are also more likely to face poor outcomes due to factors such as limited access to healthcare, being underinsured and environmental exposures.

These groups are also more likely to have public forms of insurance, and Williams’ study revealed that patients on Medicare or Medicaid have higher rates of 30-day hospital readmissions and preventable lupus hospitalizations compared to privately insured patients. Additionally, lower income levels are associated with increased disease activity, organ damage, depression, work disability and mortality. Patients living in poverty often report only being able to manage their lupus during disease flares and not being able to take care of themselves while in remission because of competing demands like food and housing insecurity.

Tips and resources

"Many of the manufacturers of drugs for lupus have patient assistance programs," Williams said. She recommended checking with healthcare institutions about financial assistance programs and contacting local chapters of the Lupus Foundation of America, which may offer support for housing and food insecurity.

In Parthasarathi’s book, the proceeds of which are donated to the Lupus Foundation of America and Lupus Research Alliance, she emphasizes the importance of lifestyle measures that can help control the disease, particularly for those who may not have access to all available treatments. Some tips include eating more whole plant-based foods, getting extra rest, reducing stress and walking for 30 minutes per day, if possible.

For women who may be struggling to get a diagnosis, both Williams and Parthasarathi encourage advocating for oneself. Williams suggests taking photos and videos and journaling about symptoms during flares so doctors’ visits during remissions are more valuable.

To those who are diagnosed with lupus, Parthasarathi said, “I would want people to feel very empowered that they can take control of their lives. Not only are there lifestyle measures that they can take to keep themselves healthier, but they will also find that they're more resilient than they think.”