Burden of Direct, Indirect Costs of Multiple Sclerosis Are Underreported, Study Suggests


The main driver of the burden was direct medical costs, especially prescription drugs (such as disease-modifying therapies), which accounted for 54% of the total medical costs per person with multiple sclerosis.

Bruce Bebo, PhD

Bruce Bebo, PhD

A 2019 evaluation of direct and indirect costs of multiple sclerosis (MS) in the US uncovered the severe economic burden these patients face, headlined by an overall associated cost of $85.4 billion, which investigators estimate will increase to $108.1 billion by 2039.

The data, published in Neurology, were originally presented at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2022, February 24-26, in West Palm Beach, Florida. At the time, lead author Bruce Bebo, PhD, executive vice president, National MS Society, told NeurologyLive® that the overall cost totals were "staggering,” and that they "exceeded any other estimate that preceded [them]."

Although MS is rarely the direct cause of death, its debilitating effects on normal body functions can result in considerable disruption to daily living and life roles. To estimate the total economic burden, investigators used a prevalence-based approach. Direct costs were obtained using large claims databases while indirect costs, such as labor market productivity losses, costs of paid and unpaid caregivers, and home modifications, were collected through a survey.

Approximately 1 million individuals in the US had MS in 2019, with the prevalence of the disease increasing with age. Of the $85.4 billion in estimated total economic burden, $63.3 billion was related to direct medical costs, nearly $21.0 billion was attributable to indirect costs, and the remaining $1.1 billion in nonmedical costs and cost of healthcare services not covered by insurance.

The largest cost component, estimated at $37.9 billion—or about 60% of the direct medical costs—was outpatient retail prescription medications, which included disease-modifying therapies (DMTs) and non-DMTs. Notably, DMT costs accounted for 89% of the total outpatient medication expenditure. The usage of DMT varied substantially by age group, with the cost per person with MS ranging from $57,202 to $92,719 depending on gender or age strata. Clinician-administered medications, including infused DMTs, and outpatient facilities were the next 2 largest direct medical cost categories at $6.7 billion and $5.5 billion, respectively.

Bebo was not surprised that DMT costs led the way, saying, "that’s consistent with other published studies looking at the direct medical expensive–that MS compared to other conditions is really driven by that disease-modifying therapy expense, but it was nice to confirm and understand that more." Bebo noted that one of the main reasons for the updated analysis was to account for the influx of approved DMTs in recent years.


As for indirect costs, the associated economic burden was $21.0 billion in 2019, with nearly $16.8 billion to patients with MS and $4.2 billion to unpaid caregivers. Premature death, accounting for $8.0 billion, or 38%, represented the highest share of indirect costs. Presenteeism ($5.9 billion; 28%) and absenteeism ($5.6 billion; 26%), the next 2 top indirect costs, were about half the cost for caregivers compared with individuals with MS. The average indirect per capita cost was $17,407 for people with MS only and $21,741 for people with MS and caregivers.

Nonmedical costs totaled $742 million, with the paid nonmedical daily care representing the largest share ($247 million; 33%), followed by purchase of special equipment for home or vehicle ($202 million; 27%). The remaining $342 million in medical costs were associated with experimental, alternative, and nontraditional treatments, which were not covered by insurance.

"Certainly, a major part of the therapeutic prescription, if you will, for MS should be a comprehensive approach to lifestyle and wellness, so indirectly reducing risk for comorbidities and managing comorbidities effectively, because we've seen how they interact [and are] intertwined with each other," Bebo added. "I think that's a big place where lifestyle, wellness is and could have even more impact, and of course, [this could also help] employers, other organizations looking to increase people’s exercise, diet, wellness, in order to reduce the expense of providing health care for the populations that they serve. So, I do think that lifestyle, wellness activities have the potential of reducing the economic burden of MS, as well as all comorbidities associated with MS."

Economic burden of MS was even higher when the governmental supplemental income programs based on disability eligibility were considered. Transfer payments to patients with MS represented an additional $6.7 billion, which did not include the total burden as transfer payments were often used to pay for both medical and nonmedical services which would double count costs.

Although the study did not answer questions related to wasteful costs, Bebo claimed it would be an interesting analysis to look at. "What are the cost savings, if you will, or benefits, of earlier, more aggressive treatment of MS? Maybe to try to answer that in some way, I certainly think that earlier diagnosis of MS, earlier treatment with effective disease-modifying therapies, all the lifestyle and wellness things people can do to reduce relapses and slow down progression—those would be things that could, in the long run, save resources, reduce the social, physical, and financial impact of MS to individuals, as well as to the system," he said.

1. Bebo B, Cintina I, LaRocca N, et al. Economic burden of multiple sclerosis in the United States: Estimate of direct and indirect costs. Neurology. Published online April 13, 2022. doi:10.1212/WNL.00000000000200150
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