Much of MS Cost Burden Falls on Patients' Shoulders


A British study shows nonmedical costs make up a significant portion of the annual expense generated by multiple sclerosis (MS). Most of those nonmedical costs are not covered by insurance.

Multiple sclerosis (MS) is a costly disease in terms of medical expenses, but a new study shows nonmedical costs also place a significant burden on patients with MS, and most of those costs are spent out of the patient’s own pocket.

A team of investigators from Swansea University Medical School and drugmaker Sanofi Genzyme wanted to better understand the total cost of MS. To do so, they tallied the medical and nonmedical costs of hundreds of people with MS over 3 months. Their analysis, which was funded by Sanofi Genzyme, is published in the current issue of Multiple Sclerosis Journal — Experimental, Translational and Clinical.

In total, the authors calculated per-patient annual medical costs (based on 2018 data) of about £3244 ($4211 US) for the 537 patients who responded to a questionnaire with sufficient data to be included in the study. Nonmedical costs broke down to £939 ($1219 US) per patient per year among the 138 patients who reported these costs. Thus, about 22% of the total cost of care of a patient with MS is spent on nonmedical interventions. Of that 22%, three-quarters was paid out-of-pocket by the patients. The rest was covered mostly by the British National Health Service (NHS) or other social services, with 5% covered by charities.

Corresponding author Rodden M. Middleton, of Swansea University Medical School, noted that the costs likely vary significantly from country to country. “[O]n some level, I am surprised that the figure of just under £1,000 per year was not more,” he told The American Journal of Managed Care® (AJMC®). “I suspect in other health care systems it would be an awful lot more.”

The study noted that nonmedical costs, unlike medical costs, were mostly nonrecurring; they included things like building new ramps and pathways or refitting a shower to make it easily accessible.

In terms of medical costs, patients in the United States pay significantly more. A 2016 study published in AJMC® showed it can cost between $30,000 and $100,000 per year to care for patients with MS, depending on the severity of the disease.

In the UK study, outpatient services made up the largest chunk of medical costs, followed by consultation costs from providers such as MS nurses, neurologists, and physical therapists. Most of those consultation costs were generated by patients with the relapsing-remitting form of the disease.

Middleton said there are a number of audiences for the study. The primary audience for the journal is neurologists, but he said other parts of the MS community would also benefit from these insights.

“However, I also want providers (the NHS and its associated bodies) to realize the burden that is being placed on people to maintain an independent standard of living and consequently improve/enable some of the spending in their services,” he said.


Nicholas RS, Heaven ML, Middleton RM, et al. Personal and societal costs of multiple sclerosis in the UK: a population-based MS Registry study. Mult Scler J Exp Transl Clin. 2020;6(1):2055217320901727. doi: 10.1177/2055217320901727.

The group that reported both medical and nonmedical costs tended to have greater disease severity and reduced employment. The medical costs of those patients were 80% higher per person than those of the group reporting only medical costs.

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