Addressing ‘Staggering’ Economic Burden for Patients With Multiple Sclerosis


Bruce Bebo, PhD, outlined findings from a recent analysis presented at ACTRIMS Forum 2022, with investigators concluding costs associated with the disease have previously been underestimated.

Bruce Bebo, PhD, executive vice president, National MS Society

Bruce Bebo, PhD

For patients with any chronic illness, the associated costs introduce a unique economic burden, not only due to medical bills, but also due to indirect and nonmedical expenses. Compared with other diseases, patients with multiple sclerosis (MS) have these expenses largely driven by the indirect productivity loss and the cost of disease-modifying therapies, highlighting the need for an updated analysis of economic burden in the field.

The National MS Society conducted one such analysis of2019, concluding that the estimated total economic burden of MS in the US was $85.3 billion, which is the additional cost above the cost of general medical care for the condition. Direct medical costs came in at $63.2 billion, while associated indirect and nonmedical costs totaled $22.1 billion. Investigators posited that these costs have actually been underestimated historically, generating significant burden for patients, their caregivers, employers, as well as society overall.1

Following his presentation of data at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2022, February 24-26, in West Palm Beach, Florida, Bruce Bebo, PhD, executive vice president, National MS Society, sat down with NeurologyLive® to discuss motivations behind the analysis, as well as some of the more ‘staggering’ statistics that were identified from the data.

NeurologyLive®:Can you discuss the reasoning for conducting this analysis?

Bruce Bebo, PhD: The inspiration for commissioning and running the study was to update that the Society made to the prevalence of MS estimate in the United States, published a few years ago, where the prevalence was estimated to be close to a million people in the United States living with MS. The inspiration also comes from the landscape we're in now, with so many disease-modifying therapies. The last time a study of the economic impact of MS was done, preceded this understanding of the prevalence of MS and preceded a lot of the disease-modifying therapy options that we have now in MS. With this new prevalence estimate and being in this age of so many disease-modifying therapies, it's felt like a good time to update the economic burden of MS, and information that we and others can use to illustrate the magnitude of MS and its impact, both socially and economically.

In your opinion, what were some of the more staggering statistics?

Well, I think the high-level number of over $85 billion annually of economic impact of MS was staggering. It's worth mentioning that that's the incremental cost for MS—or another way of looking at it is, that's the additional cost over and above the cost of general medical care that MS has in the United States. That, I think, firstly, was a huge number and exceeds any other estimate that preceded it. That's probably due, clearly to the increased expense of treating MS, the increased prevalence of MS, and so that's the first number.

The other thing that stands out for me is [that] we divided those expenses into medical expenses and nonmedical and indirect expenses. Two-thirds of that expense is a more direct medical expense, and…about 70% of that direct medical expense is related to disease-modifying therapy. I think that would be one of the big take-home [messages]. [It is] not surprising because that's consistent with other published studies looking at the direct medical expense—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. And then the indirect expenses are, I think, not so much surprising, but worth illustrating. The losses in productivity, absenteeism, presenteeism—some of those expenses that aren't reimbursable, so things like home modifications or car modifications or caretaker expenses, or even lost-time productivity of caretakers for somebody with MS, are things that maybe a lot of people don't always think about off the top of their head, but [they] contribute fairly significantly to the expense of MS.

Are there costs that may be wasteful or inefficient for patients?

I'm not sure there's anything in this study that would get at the question of waste or inefficiencies necessarily. I think that would be another interesting study to perform, really [asking]what are the cost savings, if you will, or benefits of earlier treatment, more aggressive treatment of MS? That's a question we aren't answering with this study that I think would be an interesting question to address. 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 all 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. Again, the study didn't identify or really consider where there might be waste, but certainly, I think one could potentially reduce the financial, social, and personal impact of MS [through] earlier diagnosis, aggressive treatment, and all the lifestyle, wellness things people can use to manage their disease better.

Transcript edited for clarity. For more coverage of ACTRIMS Forum 2022, click here.

1. Bebo B, Cintina I, Yang W, et al. Economic burden of multiple sclerosis in 2019. Presented at ACTRIMS Forum 2022; February 24-26; West Palm Beach, FL and Virtual. Session CE3.1.

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