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Patients With MS Want to Discuss Costs of Care, but Often Do Not


A new study suggests that people living with multiple sclerosis (MS) are often concerned about the costs of their care, but they do not always raise the concern with their doctor.

Most people living with multiple sclerosis (MS) want to speak with their physician about out-of-pocket costs, but a significant minority are reluctant to bring up the topic, according to findings of a new study based on a survey published in the journal Multiple Sclerosis and Related Disorders.1

MS can be a costly disease, in part because patients tend to be diagnosed at a relatively young age. A 2016 study2 found that lifetime costs of care for individuals with MS can top $4 million. And although disease-modifying therapies (DMTs) have dramatically reshaped the course of care for these patients, those drugs alone can cost patients more than $6000 per year.

While patient interest in cost transparency is growing, corresponding author Gelareh Sadigh, MD, of Emory University, and colleagues wrote that many patients are often confused about the complex financial terminology involved in health care. For instance, a payer’s negotiated cost for a service is often different from a patient’s out-of-pocket cost.

Sadigh and her coauthors wanted to gain a better understanding of the extent to which patients know, and want to know, about the costs of their care, as well as any sociodemographic or insurance-specific variability in patient understanding. To do so, they asked patients at an outpatient neurology clinic to complete a 15-minute paper survey that included questions about the finances of MS care, as well as how patients educated themselves about, and coped with, the costs.

The 243 respondents averaged 44 years in age. Three-quarters (76.6%) were female.

The study found that the vast majority of patients (85.3%) had an interest in discussing costs, and most (59.6) wanted to have that conversation with their provider. However, only 1 in 5 (20.5%) reported having had such a conversation in the past 3 months. A similar proportion (18.5%) said there had been times when they wanted to discuss finances with their doctor but had not had the opportunity to do so. Aside from provider conversations, 15.5% reported contacting their insurer to discuss out-of-pocket costs, and 10.6% said they had discussed out-of-pocket costs with an imaging center.

Sadigh and colleagues said there could be a variety of reasons patients don’t bring up cost concerns. In some cases, the authors said, patients might be embarrassed to talk about their personal finances. Some patients might fear their provider would be unable to find a viable solution to cost concerns, but other patients might worry the physician would opt for lower-cost and lower-quality solutions if the patient made money an issue.

The investigators said the problem sometimes comes down to physicians, who might be uncomfortable bringing up money or be unaware of the cost of specific treatments.

The authors found no significant correlation between a patient’s ability to pay for care and his or her interest in discussing out-of-pocket costs with their provider.

Sadigh and colleagues concluded that providers have a clear opportunity to improve patient communication when it comes to the costs of care. They suggested a good place to start would be to provide clear proactive transparency about the cost of DMTs, since they represent the largest portion of patient out-of-pocket expenses.

Having such conversations would not only ease patient concerns, but would also create opportunities for providers and medical practice staff to improve a patient’s access to affordable care.

“Financial navigation can further improve the effect of [out-of-pocket] cost communication by identification of opportunities to improve insurance coverage and financial assistance programs to alleviate costs of care,” they wrote.

The authors said that despite the economic toll of a disease like MS, access to cost information is “frustratingly variable.” However, they said the problem is one that providers have the power to rectify.

“There are barriers from both patient and provider perspectives to engaging in cost of care discussions that merit further investigation,” they said. “Providers should take an active role in making cost of care information more accessible to patients.”


1. Tewkesbury G, Carlos RC, Duszak R Jr, et al. Perceptions and experiences of multiple sclerosis patients regarding out-of-pocket costs of care discussions. Mult Scler Relat Disord. 2020;45:102344. doi:10.1016/j.msard.2020.102344

2. Owens GM. Economic burden of multiple sclerosis and the role of managed care organizations in multiple sclerosis management. Am J Manag Care. 2016;22(6 suppl):S151-S158.

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