The high cost of disease-modifying therapies (DMTs) for multiple sclerosis (MS), and the challenging process of insurance approval, lead to treatment gaps or alterations, increased symptoms, and sacrifices in lifestyle, a survey from the National Multiple Sclerosis Society (NMSS) shows.
“People with MS are paying the price, not only financially, but also physically and emotionally,” Bari Talente, NMSS’s executive vice president of advocacy, said in a press release.
During the past 20 years, many DMTs — those that reduce the activity and progression of a disease — have become available to MS patients. While DMT use has been associated with favorable long-term benefits and fewer hospitalizations, their high cost can be a major obstacle for patients.
A previous study showed that the increased MS annual healthcare costs seen during the past decade in the U.S. are due mainly to the increased cost of DMTs.
To better understand the effects of DMTs’ high costs in the lives of people with MS, the NMSS conducted a national study consisting of an online survey followed by telephone interviews.
Among the 12,000 MS patients invited to the online survey by email, 578 (5%) responded; 96% of them had ever used a DMT and were thus included in the study.
Most of the participants were white, 74% were women, and they had an overall average age of 35.4 years. Three-quarters of them had relapsing-remitting MS, and more than half were diagnosed more than 10 years ago.
Participants’ average household income was $83,070, with 64% of them having graduated college or higher, and 39% currently not working due to MS.
Concerning insurance, 65% of the respondents had commercial insurance, the majority through an employer, and 25% were on Medicare.
Nearly 90% of patients were currently using a DMT, with Ocrevus (ocrelizumab, marketed by Genentech) being the most frequent (23%), followed by Tecfidera (dimethyl fumarate, marketed by Biogen, 17%), and Copaxone (glatiramer acetate, marketed by Teva Pharmaceuticals; 13%).
After the online survey, 15 participants (10 women and five men) also were interviewed by phone to deepen the insights about their decisions and sacrifices associated with DMTs’ high costs.
Results showed that besides DMTs, which were reported to cost $60,000 to more than $100,000 annually, people with MS have a series of additional MS-associated costs, including non-DMT medications, doctor visits, medical exams, and healthcare plans.
More than 70% of MS patients were receiving financial assistance for their DMT — mostly from pharmaceutical companies — bringing costs down to close to zero. Most of them said that without this financial support, the financial burden would be considerable.
Among the 55% of participants who paid out-of-pocket costs for their DMT, the average annual cost was nearly $2,300, which could go up to $20,000, and half of them considered it caused at least some financial burden in their lives.
Up to 40% of MS patients changed, delayed, skipped, or temporarily stopped their treatment due to the high out-of-pocket costs, and more than half were concerned about how they were going to afford their DMT over the next few years.
In addition, the data highlighted that the greatest challenge in getting access to DMTs comes from insurance companies, and many patients experienced gaps in treatment due to delays in approvals or re-approvals for treatment, or changes in insurance coverage.
These periods without DMT may lead to MS relapses, and some participants reported a direct link between treatment gaps and increased MS symptoms.
Those high costs also were associated with emotional stress in about 40% of patients and patients’ families, who reported to have sacrificed some aspects of their lifestyle or spending to cope.
“When someone alters or stops the use of their DMT, it can lead to increased symptoms, relapses, stress and anxiety. We need to make these medications affordable and accessible so people already facing a chronic illness don’t have to deal with deciding between buying groceries for their families or paying for their medication,” NMSS’ Talente said.
Most participants also reported that DMTs’ prices were unreasonable, and that the federal government should do more to control them. One third of patients said that their out-of-pocket cost increased in the past few years, and two thirds considered that pharmaceutical companies were mainly responsible.
“MS DMTs have changed the landscape for people with relapsing forms of MS, but these medications can’t change lives unless they are accessible,” Talente said. “We need to find solutions.”
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