November 03, 2023

This article provides a summary of employer considerations, recommendations and new evidence related to multiple sclerosis (MS). It also includes a discussion of its impact on employer-sponsored health plans and what employers can do to help support patients with MS and their caregivers.

Note: A Glossary of Terms can be found at the end of this article.

What Is MS?

MS is a chronic inflammatory condition that affects the central nervous system and may cause significant disability over time, even with treatment.⁶ Although symptoms and the course of the disease vary by patient, common symptoms include fatigue, loss of balance, problems with walking, vision loss and cognitive impairment.⁶ While in the past MS has been believed to primarily affect White people, recent research suggests that the prevalence of MS in Black populations is widely undocumented and may be similar to the prevalence of MS in White individuals.³ Moreover, women are three times as likely to be affected than men, and there is no known cause or cure—though some studies attribute an increased risk of developing MS to low vitamin D levels and smoking.⁷

Impact of MS on Employer-Sponsored Health Plans

The high costs of medications, as well as the fact that treatment is ongoing, make MS a particularly expensive condition for many employers. Although there are no treatments that can reverse the neurodegenerative effects of MS, multiple treatments are available for managing the disease and its related symptoms and slowing the progression.

Considering these factors, employers can expect to see costs consistently rise year after year for affected members within the covered population. Further, innovations in pharmacological treatments have resulted in more patients able to live with MS and be active in the workforce, this combination of drug innovation and MS patients living longer with the disease have been primary drivers of increasing costs in the past decade. New disease-modifying therapies (DMTs) are being approved for both relapsing and secondary and primary progressive forms of MS, providing treatment options for patients for whom previously only off-label therapies were available.

Learn more about the drug development pipeline for MS here:

Major Cost Driver

Over the past 20 years, the cost of MS treatment has risen at a rate five to seven times higher than that of prescription drugs overall.¹⁰ It is hypothesized that about 2.9 million people live with MS around the world. For the nearly 1 million individuals estimated to be living with MS in the U.S., its total economic burden is projected to be $85.4 billion, and almost $12 billion of that total comes from the indirect costs of presenteeism and absenteeism (Figure 1).^1,11 Worldwide, the MS market for DMTs is estimated to be about $30 billion a year by 2030—a steady increase from 2019 estimates of roughly $19 billion.¹²

Source: National Multiple Sclerosis Society's Economic Burden of Multiple Sclerosis: Final Report.

Since MS progresses over time, the economic disease burden is concentrated among individuals who are most severely afflicted.¹³Disease severity also plays a role in influencing various components of spend: According to one systematic literature review, drugs were the primary cost driver for patients with low severity MS, while productivity losses (i.e., absenteeism, early retirement, premature death, etc.) was the main cost component for individuals with higher disease severity.¹⁴

Productivity and Workforce Reduction

Since the median age for onset and symptom presentation is 32 years, MS is considered a ”prime-of-life” disease. Common symptoms like fatigue, vision loss, chronic pain, loss of bladder control and cognitive impairment can restrict the ability of people living with MS to function in the workplace. Many people living with MS leave the workforce due to the inability to cope with the stress and physical or mental demands of their jobs.¹⁵ In fact, in 2019, the estimated economic burden of MS due to early retirement was almost $1 billion in the U.S. Furthermore, about 30% of working-age adults living with MS in the U.S. rely on Social Security Disability Insurance.¹⁶ An estimated 70% of individuals living with MS leave their jobs within 10 years of diagnosis.¹⁷

Source: MS International Federation’s Global MS Employment Report 2016.

The top symptom-related factors reported that prevent people with MS from staying  employed were fatigue (62%), followed by difficulty moving (51%), weakness (40%), cognitive impairments (36%) and general MS worsening (33%) —underscoring the importance of symptom management (Figure 2).¹⁷ Implementing adequate accommodations (e.g., flexible work schedule, allotted time for rest, etc.) can support symptom management in the workplace,  enabling those living with MS to remain in the workforce longer (Figure 3).¹⁷

In addition, employees who serve as caregivers for family members living with MS experience fear, fatigue, anxiety, grief, anger and exhaustion as they cope with taking care of a loved one with a serious illness.¹⁸ Many families affected by MS face financial hardships, increasing stress and potential feelings of helplessness. These stress factors can have a significant impact on productivity and contribute to the onset of various health conditions, including high blood pressure, insomnia and depression.

Source: MS International Federation’s Global MS Employment Report 2016.

The Treatment Landscape for MS

A neurologist should determine the appropriate treatment for MS, but effective disease management requires an integrated care team. Treatments seek to address one or more of the following goals:

• Slow the progress of the disease;
• Treat symptom flare-ups;
• Manage ongoing symptoms;
• Promote function through rehabilitation; and
• Address mental health issues that often accompany an MS diagnosis.¹⁹

The Role of Imaging and Diagnostic Testing in MS Management

There are specific issues discussed below, related to interpreting test results and making accurate diagnoses.

Diagnosis: MS is a complex disease to diagnose. As such, there is an important balancing act between diagnosing patients with MS swiftly while simultaneously ensuring that test results are accurate. Because there is no single diagnostic test for MS, clinicians rely on the presentation of symptoms, clinical examinations, MRIs and spinal taps to make their diagnosis. As prompt initiation of treatment is usually beneficial to the patient, there is pressure to make MS diagnoses as early as possible, increasing the risk of overinterpretation of test results and the possibility of misdiagnoses or incorrect initial treatment.

Frequency of testing: Clinicians typically use imaging tests to monitor inflammatory activity in the early stages of the disease, particularly lesions in the brain that drive many of the complications associated with MS. Clinicians may recommend imaging at least annually, along with close follow-up for people with relapsing forms of MS who are not on a DMT, have not had relapses in the preceding 2 years and do not have active new lesion activity as seen on recent MRI scans .²⁰ However, in progressive forms of the disease , functional decline associated with the neurodegenerative component of MS is not easily detected by MRIs or other imaging techniques, thereby complicating the development of effective treatment strategies.

The Role of Pharmaceuticals in MS Management

DMTs are specialty pharmaceuticals that are the primary treatments for MS. Designed to prevent and/or delay relapses, these drugs tend to be very expensive, with potentially severe side effects. DMTs have a high cost since treatment typically requires specialized therapeutic administration and close monitoring, which includes regular clinic visits as well as imaging and laboratory testing. DMTs can be offered as soon as an MS diagnosis is made and confirmed. It is unclear which treatments will work for each patient, so switching treatments early on after diagnosis is common.²¹ DMTs can be administered orally, via self-injection into the skin or muscle or by infusion. Analyses of DMT efficacy suggest that the treatments most often successful in slowing disease progression also have the highest risk of severe side effects (like infection, difficulty breathing and retinal swelling) and can be more expensive.²²

While the majority of DMTs are available only for the treatment of relapsing-remitting MS (RRMS), therapies aimed at the treatment of the more progressive forms of MS – primary progressive MS (PPMS) and secondary progressive MS (SPMS) – have begun entering the market. Most recently, the FDA approved the first biosimilar to treat both RRMS and SPMS.⁵ The FDA includes those who continue to experience periods of relapses and remissions in its definitions of both RRMS and PPMS to ensure that all patients have access to treatment, as patients with the latter forms would otherwise be left without FDA-approved treatment options.²³

Several non-specialty drugs have also entered the market specifically to address MS symptoms, such as difficulty walking and movement of the upper and lower extremities. For example, generic versions of Ampyra, used to improve walking in adults with MS, are available.²⁴ These drugs are used only for symptom relief and supportive care. They do not modify the course of the disease.

Different types of physical therapy, such as twice daily stretching therapy, are typically part of the treatment regimen for MS patients.  In addition, virtual PT solutions can play a significant role in the ongoing care for MS patients.

Recommendations for Employer Consideration

• Leverage your data: Review your claims data to assess the number of individuals and caregivers affected by MS. Then evaluate program utilization to ensure that this population is accessing support from vendor partners such as specialty pharmacy consults, advocate, navigator and care manager support, mental health/employee assistance program (EAP) resources and virtual PT.
• Drug pipeline updates: Stay abreast of updates to the MS drug treatment pipeline and request health and pharmacy plan partners to provide notification when new therapies enter the market.
• Update Rx utilization management programs as new treatments emerge: According to the 2024 Large Employer Health Care Strategy Survey, 67% of respondents use prior authorization and 42% use step therapy—both through the pharmacy and medical benefit—to manage the utilization of specialty medications.²⁷ In light of a fast-evolving treatment landscape, review formulary and utilization management programs (e.g., step therapy protocols, prior authorization criteria, site-of-care management, etc.) to ensure that they align with the latest evidence-based research to drive positive health outcomes.²⁸ Collaborate proactively with partners to set expectations and coverage protocols for MS treatments.
• Workplace flexibility: Considering offering scheduling flexibility and workplace accommodations to encourage employees with MS to remain in the workplace. Examples of modified work arrangements specifically for people with MS include rest opportunities during work breaks, as well as allowing work to be conducted while seated.
• Psychosocial safety: Ensure that the organizational environment provides appropriate and supportive working conditions that promote psychosocial safety.
• Caregiver support: To support caregivers of individuals with MS, consider offering flexible work arrangements, including remote work options and adjusted hours, to accommodate their caregiving responsibilities. Also, consider tailoring mental health resources through an EAP or mental health partner to provide counseling and educational materials for caregivers.
• Promoting awareness: To retain employees with MS, employers can ensure awareness among colleagues and supervisors about MS and its effects in the workplace by launching targeted communications campaigns. When designing communications materials, look to established resources from entities like the National MS Society.

Listed below are a selection of publicly available educational resources.

• Maximizing Your Employment Options and Financial Security
• Knowledge Is Power: For Family Members of Someone Newly Diagnosed with MS

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