In conjunction with Rheumatic Disease Awareness Month this September, the ACR and its Simple Tasks public awareness campaign released results of a national patient survey of 1,517 U.S. adults living with a rheumatic disease. Questions addressed patient experiences with access to rheumatology care, challenges related to drug and other treatment costs, and how daily living is affected by rheumatic disease.
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Responses to the Rheumatic Disease Patient Survey, which was conducted using an online polling tool on June 28 and 29, reveal that many patients face physical limitations, delays in care and high out-of-pocket costs for treatment. Many patients also reported being required by their insurers to undergo step therapy—receiving insurer-preferred treatments before being able to access a medication selected by their rheumatologist.
Access to Care
Delayed access to rheumatologic care remains a problem for a significant percentage of patients, according to the survey’s results. While 57.41% of respondents are currently treated by or have been referred to a rheumatologist, 63.68% reported they had to wait more than 30 days for their initial rheumatology appointment.
“There remains a nationwide rheumatology workforce shortage. Unfortunately, this shortage is only projected to increase,” says Christopher Mecoli, MD, MHS, director of research operations and physician lead for the Myositis Precision Center of Excellence at Johns Hopkins Myositis Center, Baltimore, and member of the ACR Communications and Marketing Committee. “Until we address this issue, the wait time to see a rheumatologist is likely to only increase. Not only do we need to increase the number of spots available for doctors to specialize in rheumatology, but we need to incentivize doctors in training to join the field of rheumatology.”
Affordability & Choice
Even when patients have insurance and can see a rheumatologist, many struggle to access their treatment of choice.
Although 90% of respondents say they have health insurance coverage, 57.13% reported they still had difficulty affording their medications or treatments in the past year. In addition, 25.1% of respondents said their out-of-pocket costs for treatment exceeded $1,000 per year, and 6.34% said their costs were more than $5,000 per year.
Almost half, or 46.49%, of respondents said their insurer forced them to follow step therapy. These patients had to receive the insurer’s preferred drug first, even when their rheumatologist was uncertain the formulary’s preferred treatment would be effective for them.
According to the survey results, 63.81% of all adults surveyed said their disease limited their ability to perform such tasks as eating, getting dressed, cooking or running errands. Limited function is more prevalent for younger people living with a rheumatic disease: Approximately 70% of patients younger than 45 reported difficulties with these simple tasks, compared with 43% of patients aged 60 and over.