Patients With Rheumatic Diseases Face Substantial Hurdles in Accessing Treatment, ACR Says

While it is well understood that timely access to treatment is key for the management of rheumatic diseases, respondents to The American College of Rheumatology (ACR) 2019 Rheumatic Disease Patient Survey reported difficulty accessing and paying for their therapies in the past year.

The survey, which was conducted online in June of 2019 among a nationally representative sample of 1517 adults with rheumatic disease, sheds additional light on findings from last year’s 2018 Rheumatic Disease Report Card, which graded individual US states on patients’ ability to live well with rheumatic disease.

One key finding of this year’s survey is that step therapy is being widely employed as a utilization management tool. Step therapy is a strategy under which which less expensive drugs must be administered and found to be ineffective before a patient gains access to higher-cost drugs, often including biologics and their biosimilars. In total, 46.49% of patients said they had been required to undergo step therapy in the past year. Patients in Kentucky, Tennessee, Mississippi, Alabama, New York, New Jersey, and Pennsylvania were more likely to be subject to step therapy than those who lived elsewhere, and approximately half of all men receiving treatment were required to undergo step therapy.

These findings concerning step therapy are particularly notable given that, starting this year, CMS implemented a change allowing Medicare Advantage plans to use step therapy for Part B drugs. According to the ACR in a statement issued earlier this year, “Step therapy has resulted in forced drug switching, treatment gaps, and cessation of effective therapy.” Downstream effects, the group added, include uncontrolled disease, disability, and increased healthcare costs.

The cost of care was indeed a key issue for respondents in this year’s survey; 57.13% of patients said they had difficulty affording their therapy in the past year. Affordability concerns were not limited to the uninsured; while 90.16% of patients were insured, 56.98% of patients with insurance said they had difficulty affording their treatments. In total, 25.10% of patients reported that their out-of-pocket spending was higher than $1000, and 6.24% said their spending exceeded $5000 each year. Among those who had insurance, 23.76% paid more than $1000 out of pocket for their medication every year.

Additionally, 57.41% of patients said they were being seen by or had been referred to a rheumatologist, but 63.68% had to wait more than 30 days to receive an initial appointment, and 39.58% had to wait between 31 days and 60 days.

“These findings make clear that Americans living with rheumatic disease—regardless of age, gender, or income level—struggle to find affordable care," said Paula Marchetta, MD, MBA, president of the ACR. “To address these challenges, it is crucial for patients, clinicians, and policymakers to work together to improve access to rheumatology care so that patients can live longer, healthier, and more fulfilling lives.”