2019 rheumatic disease patient survey

The American College of Rheumatology (ACR)’s Simple Tasks team surveyed more than 1,500 Americans currently living with a rheumatic disease.The findings of this survey have been compiled in a new report called the 2019 Rheumatic Disease Patient Survey: Access, Affordability, and Lifestyle Challenges Persist for Americans Living with Rheumatic Disease.

The survey makes clear that Americans with rheumatic disease – regardless of gender, age, or income – are struggling to access affordable care that improves their quality of life. The 2019 patient survey provides additional context to the 2018 Rheumatic Disease Report Card and contributes new insights into the unique access, affordability, and lifestyle challenges these individuals face.


Key Findings

  • Even though 90 percent of patients surveyed reported having health insurance, roughly 60 percent said they had difficulty affording medication or treatment in the past year.
  • Close to 60 percent of survey respondents are currently being treated by a rheumatologist or have been referred to seek treatment. However, about two-thirds had to wait more than 30 days after referral before getting an initial appointment with a rheumatologist.
  • Nearly half of respondents who receive treatment for a rheumatic disease reported their insurance company forced them to undergo step therapy. Step therapy forces patients to try – and fail – treatments preferred by the insurance company before a doctor-prescribed option can be approved, even when a patient’s doctor is uncertain the insurer-preferred option will be effective.
  • One-quarter of respondents reported out-of-pocket costs greater than $1,000 per year for treatment, while about six percent of patients reported out-of-pocket costs greater than $5,000.
  • Almost two-thirds of patients reported that their rheumatic disease limited their ability to perform simple tasks such as eating, getting dressed, cooking, or running errands.


Take Action

The crisis detailed by this survey is not insurmountable; it can – and should be – alleviated with appropriate legislative and regulatory reforms. In light of these challenges, it is critical that patients, clinicians, and policymakers work together to improve access to rheumatology care, make it easier for patients to afford their prescribed treatments and help rheumatic disease patients live longer, healthier and more fulfilling lives. Learn how you can take action.