Are Neurologists Adhering to Multiple Sclerosis Treatment Guidelines?


Data have suggested that neurologists treating MS have clearly and persistently deviated from the readily available evidence regarding DMT use, all while costs continue to rise and payers intensify efforts to control them.

Dr Regina Troxell

Regina M. Troxell, MD, a pediatric neurologist at the University of Texas Health Science Center

Regina M. Troxell, MD

The findings of a recent study have shown that neurologists have clearly and persistently deviated from the readily available scientific evidence regarding the utilization for disease-modifying therapies (DMTs) for the treatment of multiple sclerosis (MS).1

All told, the data showed that DMT use increased overall from 55.3% to 61.5% over the course of 9 years, and from 63.5% to 68.7% in relapsing-remitting MS, specifically. Notably, in secondary progressive disease and primary progressive disease, the use of DMTs was considerable—contrary to the recommendations of the evidence-based guidelines—going from 47.2% to 51.5% over 9 years in secondary progressive MS and from 36.4% to 34.3% in primary progressive MS.

Using data from the Sonya Slifka Longitudinal Multiple Sclerosis study, a research team including Regina M. Troxell, MD, a pediatric neurologist at the University of Texas Health Science Center, and colleagues, sought to compare the use of DMTs between 2000 and 2009, the use and cost of DMTs in 2009, and explore the adherence to the treatment guidelines (which had been available since 2002). The findings were presented in a late-breaking poster session at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2019 Forum in Dallas, Texas.

“For individual patients, there may be good reasons to deviate, and these should be fully discussed so patient and clinician can reach a shared decision,” Troxell and colleagues detailed. “However, our data suggest that prescribers were not aware of or were not following evidence-based guidelines for individuals with non-relapsing courses [of disease], over age 54, and severe disability.”

In a recent panel discussion during a NeurologyLive Peer Exchange series, Fred D. Lublin, MD, the Saunders Family professor of neurology at the Icahn School of Medicine at Mount Sinai, and director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis, expressed that the decision-making process for selection therapy should be a shared one, as it is a complicated treatment regimen.2

“[The] American Academy of Neurology wisely recommended, in their treatment guidelines, 2 visits—1 for a diagnosis and then a second visit to go over therapy because it’s a long discussion,” Lublin said. “It’s a very long discussion. I think that a lot of the individuals come in, and they’re pretty well informed and bright, but with a lot of preconceived notions.”

He explained that he’s seen many patients in the clinic display concerns about the length of time a given treatment has been available, something Lublin noted implies that, when it comes to therapy, patients are more concerned with safety than efficacy. “It skews the discussion. We have people who we start on less aggressive therapies because they want something that’s been around for a long time and is safe,” he said.

“As a result, many patients risk adverse effects and high costs without the likelihood of benefit,” they added.

In terms of cost, the study findings showed that the average annual cost for treatment for individuals was between $939 and $3101 in 2009. Some patients were shown to pay as much as $7495 per year. Payers, on the other hand, averaged annual costs between $16,302 and $18,928, with some paying up to $56,483 annually.

Troxel and colleagues noted in their presentation that the field of neurology is facing greater constraints on patient and clinician medication preferences, which has been paralleled with rising prices and intensified efforts to control the cost of medicines by payers.

“More evidence and education are needed to ensure the most appropriate treatments for the right individuals at the right time at the right cost,” the investigators concluded.

According to a National MS Society report, the average wholesale cost of DMT was $61,000 in 2013 and increased to $83,688 in 2017. Additionally, the report noted that in 2004, the cost of DMT accounted for roughly 50% of the direct medical costs for treating someone with MS and since increased to almost 75% of the cost of treating someone with MS in 2017.3

“Despite more than a dozen disease-modifying therapies (including a generic) available to treat relapsing forms of MS, competition has not driven down prices,” the report detailed.


1. Kinkel R, Minden SL, Troxell RM. Use and cost of disease-modifying therapy between 2000 and 2009: are neurologists adhering to treatment guidelines? Presented at: ACTRIMS Forum; February 28 to March 2, 2019; Dallas, TX. Poster #LB318.

2. Lublin FD, Coyle PK, Dhib-Jalbut S, Leist TP, Markowicz C, Stankiewicz J. Advances in the Diagnosis and Management of Multiple Sclerosis. NeurologyLive website. Published February 25, 2019. Accessed March 1, 2019.

3. Access to MS Medications. National MS Society. Published 2017. Accessed March 1, 2019.

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