#ECTRIMS2021 – Economic Burden of MS in US Exceeded $85B in 2019

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by Marisa Wexler, MS |

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Editor’s note: The Multiple Sclerosis News Today team is providing in-depth coverage of the virtual 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), Oct. 13–15. Go here to see the latest stories from the conference.

The total economic burden of multiple sclerosis (MS) in the U.S. in 2019, including medical costs and the loss of productivity among patients, exceeded $85 billion, a new analysis shows.

And that number is only expected to increase over the next two decades, according to the National MS Society, which commissioned and paid for the study.

“By 2039, the prevalence of MS in the United States is projected to increase to 1.1 million people, and the economic burden will increase to $105.5 billion,” Bruce Bebo, PhD, the executive vice president of research at the National MS Society, said in a presentation last week at the 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).

Bebo shared the findings of the nonprofit’s study in a presentation titled “A comprehensive assessment of the total economic burden of multiple sclerosis in the United States.”

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The researchers noted, in their abstract, that the neurodegenerative disease affects family members as well as patients, saying the indirect costs of MS include an estimated amount of more than $4 billion for unpaid caregivers, many of whom are relatives.

Overall, “our findings suggest that the burden of MS in the U.S. has been previously underestimated,” the researchers wrote.

Living with MS can be expensive on all fronts, the team noted. In addition to the costs of MS-related healthcare, the disease can make it harder for a person to work. Family members and other informal caregivers also may have to cut back on paid work to help care for the person with MS. And ultimately, the possible premature deaths of MS patients can impact future earnings.

“Up-to-date estimates of the economic burden of MS can be a critical tool for increasing public awareness and to support policy decisions concerning allocation of healthcare resources, and hopefully lead to better healthcare coverage policies and outcomes for people with MS,” Bebo said.

“Prior studies of the economic burden of MS in the United States are outdated, due in large part to the recent update in the prevalence of MS, and the availability of many new disease-modifying therapies,” Bebo said.

Using models combining the estimated prevalence of MS with per-person costs, Bebo and colleagues set out to calculate an updated estimate. The team computed the direct costs of MS — the difference in total medical costs paid by people with MS, compared with costs paid by matched healthy people (those without MS, who were used as controls) — based on insurance data. The researchers also used national databases to estimate the cost due to lost work, and a survey of 946 patients to estimate non-medical costs.

The total estimated economic burden of MS in 2019 was $85.4 billion, the results showed. The majority of this cost, about $63.3 billion, was attributed to direct medical costs of MS.

“Outpatient retail prescription medications, including disease-modifying therapies and non-disease modifying retail prescription drugs, were the largest component of the direct medical costs, about 60%,” Bebo said.

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The next two largest categories included medications administered in hospitals — including most therapies given by infusion, which can not be administered at home — and outpatient expenses.

Indirect costs of MS accounted for $21 billion. Of that, $16.8 billion was attributed to people with MS, with another $4.2 billion due to unpaid caregivers. The main contributors to indirect costs were premature death (38%), followed by presenteeism (28%) — defined as going to work, but being unable to fully do one’s job — and absenteeism (26%), or being unable to go to work.

Non-medical costs, including healthcare not covered by insurance, accounted for another $1.1 billion in MS costs in 2019.

Bebo noted that, even after correcting for inflation, the per-person cost of MS in this estimate is higher than that found in prior studies. The estimate is, however, similar to recent estimates of cost for other disabling diseases like amyotrophic lateral sclerosis and Duchenne muscular dystrophy.

The researchers also assessed trends in MS prevalence and costs to estimate how the economic burden of the disease will change over the next two decades, with the costs by 2040 expected to exceed $105 billion, according to Bebo.

“We hope this study will help increase public awareness of the comprehensive impact of MS, and support policy decisions that enhance access to high-quality, affordable healthcare for people with MS,” he concluded.

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