Findings from a new study of more than 1,300 people with lupus show that several barriers to care can impact a lupus diagnosis. The study, conducted by the Lupus Foundation of America in partnership with Exagen Inc. (NASDAQ: XGN) was presented recently at the 2021 Lupus 21st Century Conference.

Respondents faced many healthcare challenges from the time they first saw a doctor for their symptoms. Healthcare-related challenges associated with delayed diagnosis included: 

  • Overall, more than half (51%) reported long wait times before seeing a specialist; those with delayed diagnosis (5 or more years) reported this problem in higher numbers (58%) than those who were diagnosed in less than a year (39%).
  • Almost a third (31%) of all respondents reported that out-of-pocket costs were too high; those with a delayed diagnosis also reported this in higher numbers (36%) than those diagnosed within a year (23%). 
  • Overall, 30% of all respondents noted that there were not enough doctors nearby to treat lupus; 32% with a delayed diagnosis reported this while 25% of those diagnosed in less than a year did the same. 

Other barriers associated with delayed lupus diagnosis and care included insurance not covering the costs of needed services and long wait times to receive an appointment with primary care providers.

“People with lupus need access to the care they need to receive an accurate diagnosis and improve health outcomes,” shared Stevan W. Gibson, President & CEO, Lupus Foundation of America. “Our study underlines the barriers that are faced by patients seeking critical medical care from health care providers for symptoms that could be lupus and shows the importance in working with the medical community to further practitioner education of lupus, availability of specialists such as rheumatologists, and working toward solutions to reduce out-of-pocket healthcare costs.”

The study also found that many respondents reported they were misdiagnosed, including with anxiety (32%), depression (30%), or fibromyalgia (23%), before their lupus diagnosis. Almost 22% were told nothing was wrong with them.

“Lupus can be difficult to diagnosis due to its diverse symptoms and impact on each individual. However, there is a lot we can do to help ensure an accurate lupus diagnosis and access to care,” added Donald Thomas, MD, author of The Lupus Encyclopedia. “This study helps further identify key barriers to lupus diagnosis and care, which is important to better understand how to overcome these barriers. We need to grow the specialty of rheumatology by mentoring young doctors to attract them to the field, continue to educate healthcare providers on identifying and diagnosing lupus patients at earlier stages of their illness, and ensure access to programs that help alleviate healthcare costs and access barriers for people with lupus.”

Learn more about the study, including its limitations, in the fact sheet, and check out an infographic highlighting key findings.