Hello patient advocates! In recognition of Rheumatic Disease Awareness Month™ (RDAM), the American College of Rheumatology conducted a national patient survey to better understand the scope and impact of rheumatic disease in America.

Over 1,500 adults (aged 18 years and older) living with a rheumatic disease were asked a range of questions about how their disease impacts daily life. As a follow-up to last year’s Rheumatic Disease Report Card, this survey offers valuable insights into the unique access, affordability, and lifestyle challenges these individuals face.  Here are some of the key findings.

Access to timely care was a challenge for most survey respondents. Nearly 60 percent of survey respondents are currently being treated by a rheumatologist or have been referred to seek treatment, but of those patients, two-thirds had to wait over 30 days between their referral and an initial appointment.

And, nearly half of respondents who receive treatment for a rheumatic disease reported their insurance company forced them to undergo step therapy. It also appears step therapy affects younger and lower income patients more severely. Step therapy forces patients to try – and fail – insurer-preferred treatment options first before getting the treatment their doctors originally prescribed. This happens even when doctors doubt the insurer-preferred option will be effective – and causes delays in patients receiving proper care.  Learn more about step therapy and how it delays patient access to care

Survey respondents also reported difficulty affording treatment – even though most were insured. Nearly 60 (57.41%) percent of rheumatic disease patients said they had difficulty affording their medication(s) or treatment(s) within the past year. While the median annual out-of-pocket spending on these treatments was $475, nearly a quarter of patients reported out-of-pocket expenses greater than $1,000. Costs were even greater for about six percent of patients, who reported out-of-pocket costs of more than $5,000 per year. Sadly, these affordability concerns persist despite the fact that 90 percent (90.16%) of patients surveyed reported having health insurance coverage.

Most patients – particularly young ones – face activity and lifestyle limitations due to their disease. When asked if rheumatic disease limited their ability to perform simple tasks like eating, getting dressed, or cooking, almost two-thirds (63.81%) of patients answered yes. Of note, younger patients appear to experience more limitations than their older counterparts. This may indicate that younger patients are, on average, living with more severe and debilitating rheumatic diseases. This finding also challenges the common misconception that rheumatic diseases primarily affect older individuals.

Interested in learning more about the Rheumatic Disease Patient Survey?
Read an executive summary that delves deeper into its findings. You can also help us raise awareness of the scope and impact of rheumatic disease by sharing this survey in a letter to the editor of your local paper. You’ll also automatically be signed up for our Rheum4You updates and ways to advocate for improved access to rheumatic care.

Dr. Christopher Mecoli

Christopher Mecoli is a physician-scientist in the Division of Rheumatology of The Johns Hopkins School of Medicine. He is a member of the American College of Rheumatology’s Communications and Marketing Committee.