The Economic Burden of Multiple Sclerosis in the United States: Estimate of Direct and Indirect Costs

Abstract

Background and objectives: A recent report estimated that approximately 1 million adults were living with multiple sclerosis (MS) in the United States. 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 including work, physical independence, mobility, social interaction, and participation in leisure activities. This study estimated the total economic burden of MS in the United States in 2019.

Methods: This study used a prevalence-based approach to estimate the national economic burden of MS. Claims from 3 sources (Medicare Current Beneficiary Survey, Medicare Standard Analytical File, and Optum de-identified Normative Health Information System) were used to obtain direct costs and a survey was developed to collect indirect costs (e.g., labor market productivity losses, costs of paid and unpaid caregivers, home modification) from 946 patients with MS (PwMS). Direct medical costs reflected the difference in the total average annual amount paid for PwMS vs matched controls without MS. Future earnings loss due to premature death attributable to MS was calculated using Centers for Disease Control and Prevention mortality data and Medicare claims data.

Results: The estimated total economic burden was $85.4 billion, with a direct medical cost of $63.3 billion and indirect and nonmedical costs of $22.1 billion. Retail prescription medication (54%); clinic-administered drugs, medication, and administration (12%); and outpatient care (9%) were the 3 largest components of the direct costs. The average excess per-person annual medical costs for PwMS was $65,612; at $35,154 per person, disease-modifying therapies (DMTs) accounted for the largest proportion of this cost. The cost per DMT user ranged from $57,202 to $92,719, depending on sex-age strata. The average indirect and nonmedical costs were $18,542 per PwMS and $22,875 per PwMS if caregivers' costs were included. Lost earnings due to premature death, presenteeism, and absenteeism losses were the largest indirect cost components.

Discussion: MS is a costly chronic disease, with direct costs of prescription drugs and indirect productivity loss being important cost drivers. Our findings suggested that the burden of MS in the United States has been underestimated.

Figure 1. Flowchart of Cost Calculation and Data Sources

CDC = Centers for Disease Control and Prevention; dNHI = Optum de-identified Normative Health Information system; MCBS = Medicare Current Beneficiary Survey; Medicare SAF = Medicare Standard Analytical File 5% sample; MS = multiple sclerosis; WONDER = Wide-ranging Online Data for Epidemiologic Research.

Figure 2. Total Economic Burden of MS in the United States in 2019: $85.4 Billion

Source: Lewin Group analyses of multiple sclerosis (MS) prevalence using published prevalence rates and Census population projection for 2019 combined with direct medical cost estimates using 2017–2019 Optum de-identified Normative Health Information system claims, 2017–2019 Medicare Standard Analytical File 5% sample claims, and 2018 Medicare Current Beneficiary Survey; indirect and nonmedical cost estimates are from the MS Impact Survey.