2020 rheumatic disease patient survey


In conjunction with Rheumatic Disease Awareness Month 2020, the American College of Rheumatology and its Simple Tasks™ public awareness campaign conducted a national survey of more than 1,100 individuals living with rheumatic disease to gain a better understanding of the quality of life issues associated with these diseases. The survey results build on the ACR’s 2019 National Patient Survey and provides new insights into how these issues have changed over time.

The results suggest that Americans with rheumatic disease – regardless of gender, age, or income – struggle with the invisibility of their disease and lack access to affordable care that can improve their quality of life.


Key Survey Findings

  • From 2019 to 2020, there was a 52 percent decline in the percentage of respondents who said they were currently being treated by a rheumatology provider.
  • The vast majority — approximately 83 percent — of people living with a rheumatic disease reported at least one activity limitation as a result of their disease, including ability to exercise, work, and perform physical activities.
  • A majority (68 percent) of respondents reported their disease sometimes feels invisible because they don’t “look sick” to most people.
  • Out-of-pocket costs more than doubled from 2019. The median annual out-of-pocket treatment cost in 2020 was $1,000 — up from $475 last year.
  • Almost half (47 percent) of patients reported that their insurer subjected them to step therapy requirements. About another half (48 percent) reported that their provider needed to obtain prior authorization before getting a prescription.
  • About two-thirds (66 percent) of patients reported having a telehealth appointment with their rheumatologist within the past year, with COVID-19 reported as the most common reason.


Tell Your Story

How do the results of the 2020 patient survey compare to your personal experience with a rheumatic disease? By telling your story, you can help to raise awareness about what it is like to live with a rheumatic disease and help policymakers understand the access and affordability issues patients face today.

Tell Your Story Now