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.
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.
What Can Providers Do?
Rheumatologists and rheumatology professionals can take action to help change some of these trends by pressing state and federal lawmakers to rein in step therapy and make care more accessible and affordable for patients, says Dr. Mecoli.
“The ACR advocates on a regular basis in Washington, D.C., to curb costs of medications used to treat rheumatic diseases. Patients and caregivers can also get involved by visiting the ACR’s Legislative Action Center online,” he says. “They can find sample letters to customize to send to their representatives about their own stories and experiences.” The ACR’s annual Advocates for Arthritis fly-in event, which took place in Washington, D.C., earlier in September, gathers rheumatologists and patients to visit the Capitol and meet with legislators to discuss current bills and the issues that people with rheumatic diseases face every day, he adds.
The ACR currently supports several bills designed to address some of the problems highlighted in the Rheumatic Disease Patient Survey results:
- The EMPOWER for Health Act (H.R. 2781) would help increase the number of pediatric subspecialists practicing in underserved areas by providing loan repayment assistance for healthcare professionals who agree to work at least two years in pediatrics;
- The REDI Act (H.R. 1554) would amend the Higher Education Act to defer the accumulation of interest on student loans for those who serve in a medical internship or residency program. This legislation is designed to make medical education more affordable in an effort to expand the workforce; and
- The Safe Step Act of 2019 (H.R. 2279) would place parameters around the use of step therapy and provide an exceptions process for any medication step therapy protocol.
For more information on current legislation affecting rheumatology care and patients with rheumatic diseases, visit the ACR Legislative Action Center.
Susan Bernstein is a freelance journalist based in Atlanta.
