Nearly 60% of respondents in a national survey of people with juvenile arthritis and other rheumatic diseases reported struggling to afford their medications in the past year.
The online survey, conducted by the American College of Rheumatology (ACR) in June, with the results recently released, included 1,517 adults living in the U.S. Participants were asked about their lifestyle, access to healthcare, and its affordability.
Results showed that although most of the respondents (90%) had health insurance coverage, nearly 60% had difficulties affording their treatments.
Nearly half reported that insurance companies impose a step therapy, in which patients must take — and fail to respond to — an insurer-preferred treatment before they are covered for therapy options prescribed by their doctors. This occurred even when a patient’s doctor doubted the efficacy of the insurer-preferred option.
Out-of-pocket costs greater than $1,000 a year were reported by one in four of the respondents. In 6% of the cases, yearly out-of-pocket costs skyrocketed to over $5,000.
While more than 50% of the respondents are currently followed by or have been referred to a rheumatologist, the waiting period before a first consultation was more than 30 days in approximately 60% of the cases.
Nearly two-thirds of patients (63.81%) reported impairments to their daily lives, with the disease affecting their ability to perform simple tasks such as eating, getting dressed, cooking meals, or running errands.
“These findings make clear that Americans living with rheumatic disease — regardless of age, gender, or income level — struggle to find affordable care,” Paula Marchetta, MD, president of the American College of Rheumatology, said in a press release.
“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,” Marchetta added.
Together with people with rheumatology, ACR staffers recently attended the annual Advocates for Arthritis event at Capitol Hill, to push for changes to legislation. Specifically, the advocates urged for a stop in the excessive use of step therapy by insurance companies and for legislation that would increase the number of rheumatologists.
The 2019 survey followed last year’s 2018 ACR survey, which asked patients from all 50 states and the District of Columbia, “How easy is it to live with rheumatic disease in my state?” This year’s assessment adds further information on the challenges faced by people diagnosed with a rheumatic disease.
According to the Centers for Disease Control and Prevention, nearly one in four Americans have a rheumatic disease, which includes juvenile arthritis, rheumatoid arthritis, systemic lupus erythematosus, and Sjögren’s syndrome. As as many as 300,000 children in the country are estimated to have juvenile arthritis.