These additional costs associated with MS treatment and care represent nearly three-quarters of the total economic burden of the condition, the researchers, from the National Multiple Sclerosis Society, say. The estimated cost of MS for everyone with the condition in the United States reached $85.4 billion in 2019, they add. These costs not only reflect expenses associated with medications and healthcare; people with neurological disability are often unable to continue working or may have to limit employment activities. In addition, family members of people with MS and other neurological conditions often need to leave their own employment to be caregivers for their loved ones, according to the researchers. These costs are also reflected in this analysis as nonmedical costs, they say.
MS Is Expensive to Treat, Disruptive to Life
“Multiple sclerosis is an expensive disease to treat, and the debilitating effects of MS can result in considerable disruption to daily living, including work, physical independence, mobility, and social interaction,” said one of the study’s authors, Bruce Bebo, PhD, the executive vice president for research with the National Multiple Sclerosis Society in New York City, in a press release. “The findings of this study help underscore the burden of MS in the United States, and our hope is our results will inform decision-making regarding MS-related health resources.” MS affects the central nervous system, which includes the brain, spinal cord, and optic nerves, and its symptoms — such as fatigue, numbness and tingling, loss of balance, weakness, and vision problems — are chronic and, often, unpredictable and disabling, according to the National MS Society. An estimated one million people in the United States are living with MS, and while there are disease-modifying medications to slow progression, there’s currently no cure, the society says.
How the Study Data Was Gathered
For this study, Dr. Bebo and his colleagues reviewed Medicare and insurance claims data to calculate direct medical costs for 10,589 people with MS and another 105,893 people without MS. Specifically, they calculated the per person direct medical costs for 2017, 2018, and 2019, and then determined average expenses for one year. In addition, they surveyed 946 study participants with MS and their caregivers about indirect costs, such as job loss or lost productivity at work, costs for paid and unpaid caregivers, and expenses for needed home modifications. Of the estimated total economic burden of $85.4 billion, $63.3 billion included direct medical costs, the researchers note. Prescription medications were the largest component, accounting for $37.9 billion, or 54 percent, of these direct medical expenses, while drugs administered in the clinic made up $6.7 billion, or 12 percent, and outpatient care made up $5.5 billion, or 9 percent, they say. Of the $65,612 in excess care costs per person per year with MS, $35,154 were for medication, according to the researchers. The annual cost for a person taking MS medications ranged from $57,202 to $92,719, they add. The study, which was commissioned and paid for by the National Multiple Sclerosis Society, determined indirect and nonmedical costs based on survey responses and, thus, relied on respondents’ memory, meaning some costs may have not been accurately reported, the researchers note.
More Support Needed for People With MS and Their Families
“The costs of MS are very high, not only on a personal level but also on a national level,” Bebo says. “Our results suggested a possible role for additional policy initiatives to better support individuals and families affected, in terms of providing treatment and long-term care, work-site support, employment, and occupational training. These measures could reduce the economic burden of MS and help improve the lives of those living with MS and their family caregivers.” “We’ve known for some time that disease-modifying therapy costs for individuals with MS have been risen rapidly over the last 20 years,” adds Daniel Hartung, a pharmacist with an expertise in drug costs and a professor of pharmacy at Oregon State University in Corvallis. “This work further highlights the oversized economic footprint [treatment] costs have for individuals with MS and the continued need for legislative reforms to help people and payors absorb these costs.”
Study Underscores the Importance of Early, Effective Treatment
Jacqueline A. Nicholas, MD, MPH, the system chief for neuroimmunology and MS at the OhioHealth Multiple Sclerosis Center in Columbus, who has studied costs associated with the condition, says her research has come to similar conclusions. “These estimates are in line with our prior studies and show that disease-modifying therapy drives healthcare costs in MS,” says Dr. Nicholas, who was not part of the National MS Society study. “While drug costs are a key driver, productivity loss for individuals with MS and their caregivers due to absenteeism and presenteeism is high. These findings support the use of early and effective treatment for MS to prevent disability, which may lessen work and social productivity loss. MS advocates can use this data to promote policy change at state and national levels. This data can help to encourage employers to be flexible in terms of work schedule and accommodations for those with MS.”
