ACR Survey Reveals Patients Struggle to Maintain Access to Care During COVID-19 Pandemic

A national survey of individuals with rheumatic diseases found that many face difficulties in obtaining access to care, with many forgoing physician care completely.

The survey was conducted in June by Rheumatic Disease Awareness Month 2020 and the American College of Rheumatology (ACR) and its Simple Tasks public awareness campaign. It builds on the ACR’s 2019 National Patient Survey and provides new insights into how issues regarding rheumatic diseases have changed over time and how the coronavirus disease 2019 (COVID-19) pandemic has impacted access to care.

“The survey findings show that Americans living with a rheumatic disease face significant challenges in their daily lives — including treatment access and affordability issues,” wrote the authors of the survey report.

The survey revealed that there has been a 52% decline in patients currently seeing a rheumatology provider between 2019 and 2020. In 2020, 33.5% of patients said they were currently receiving care, compared with 57.4% of respondents in 2019 who said they were being treated by a rheumatology provider. Of those in 2020 who reported that they were no longer being treated by a rheumatology provider, 38.23% said that they used to be.

Additionally, the survey found that reported wait times to be seen by a rheumatologist have increased since 2019, with 17.13% of patients reporting waiting between 61 to 90 days to get a first appointment with a rheumatologist following a referral, compared with 13.39% in 2019.

“These results could be attributed to factors such as the COVID-19 pandemic, an increase in the number of individuals without health insurance, and the growing nationwide shortage of rheumatology health professionals,” the authors wrote.

Almost half (49.20%) of respondents who receive a prescription medication for their rheumatic disease reported that medication shortages prevented them from being able to get their prescriptions filled. The most common out-of-stock medications included hydroxychloroquine, methotrexate, gabapentin, acetaminophen, and ibuprofen.

Prior authorization was required for nearly half (47.94%) of patients in 2020. Prior authorization requirements can restrict access to lower-cost medications such as biosimilars and prolong a patient’s waiting period before receiving treatment.

Affordability has also become an issue in 2020, with annual median out-of-pocket (OOP) expenses more than doubling over the past year. In 2019, the annual median OOP expense was $475 and rose to $1000 in 2020. Furthermore, in the June survey, 26.68% of patients reported spending more than $2000 in out-of-pocket costs.

About 66% of patients reported that they had taken advantage of telehealth within the past year, with 52% of patients citing the pandemic preventing them from being seen in the office as the main reason. Two other reasons cited for using telehealth were that the patient’s routine check0up didn’t require an in-office visit (49.52%) and that their rheumatologist was too far from where the patient lived (19.31%).

“It is critical for patients, clinicians, and policymakers to work together to improve rheumatology care so that those living with these diseases can live longer, healthier, and more fulfilling lives,” wrote the authors.