Multiple sclerosis (MS) is an expensive disease to treat, with medications alone potentially costing tens of thousands of dollars per year. But does MS become even more expensive when it’s not treated?

For people with MS, there’s a great deal at stake in that question. MS is a chronic neurological condition that often leads to disability. Studies have found as many as 60 percent of people with MS may lose the ability to walk unaided within 20 years after symptoms begin. MS can also cause disability due to vision loss, muscle weakness, fatigue, and cognitive impairment — among other symptoms.

Disease-modifying therapies (DMTs) are the only treatments approved by the U.S. Food and Drug Administration (FDA) to treat MS based on their effectiveness in slowing the progression toward disability. The median annual cost for a DMT for MS in 2019 was $88,000.

The Price of Delaying Treatment

Seen through an economic lens, the cost of not treating MS may be even higher than the cost of treatment. A Swedish study from December 2020, published in Multiple Sclerosis Journal — Experimental, Translational and Clinical, examined how starting early treatment affected the future income of 3,610 people with MS. Researchers looked at how long it took people who had initiated DMTs within two years of diagnosis to reach a 95 percent loss of earnings compared to how long it took people who started DMTs after the two-year mark. Those who delayed treatment were 8 percent more likely to lose income earlier and require social support benefits sooner.

Individuals with MS and employers both shoulder the cost of gaps in MS treatment. A 2012 article in the Medical Journal of Economics examined how treatment adherence (sticking with DMTs) among people with MS financially impacted their employers. Researchers analyzed administrative claims of 4,347 employees of large U.S. companies who had received a diagnosis and started taking a DMT. The results showed that, over a two-year period, employees who adhered to their DMT regimen had five fewer days of disability leave and five fewer work-loss days on average, compared with those who discontinued treatment or experienced treatment gaps.

Apart from delaying income loss and improving productivity, sticking with DMTs may reduce overall health care costs for people living with MS. A 2011 study of 2,446 people with MS found that those who stayed on their DMTs spent, on average, about $1,000 less in MS-related medical costs after one year compared with those who stopped taking their prescription drugs. Moreover, those who stuck to their MS medications were 37 percent less likely to be hospitalized for MS-related symptoms than those who discontinued treatment.

Economic Hardships Can Force Treatment Delays

According to the results of a January 2020 survey by the National Multiple Sclerosis Society, 40 percent of people with MS change or discontinue their DMTs due to cost. Drug manufacturer rebates and patient assistance programs can lower costs, with some offering $0 copays for those with eligible health insurance plans. Free medication is sometimes available for those below a certain income, but that threshold may be too low for some of the 40 percent of Americans with MS who receive disability insurance. Those using Medicare do not qualify for manufacturer assistance programs.

In 2018, the National Multiple Sclerosis Society issued a statement expressing concerns that copay adjustment programs may actually jeopardize access to DMTs. In some cases, employer health plans and pharmacy benefit managers prohibit benefits from applying to annual deductibles and out-of-pocket maximums. In this scenario, people with MS wind up facing unexpected expenses as they pay 100 percent of the cost of DMTs until their deductible is met.

When copay assistance is not applied to deductibles, it prolongs the time it takes for some people to reach their deductible. Consequently, they may end up having to postpone treatment for other health care needs until their coverage kicks in.

Weighing the benefits against the costs of MS treatment is a complex personal decision that goes far beyond cost-effectiveness for those living with the condition. Researchers are finding new ways to approach the question of early treatment versus waiting to treat MS. A 2020 article in Multiple Sclerosis and Related Disorders called for the development of criteria that can accurately predict the course of MS. Knowing how their disease will progress may help those with MS and their neurologists better weigh the benefits of costly treatment versus the risk of costly delays.