What Happens When MS Progresses? A Hidden Cost Few See Coming

by Jon Scaccia April 18, 2025

For many people with secondary progressive multiple sclerosis (SPMS), this shift is more than symbolic—it’s the moment when independence starts to slip away. What follows isn’t just a physical challenge. It’s a financial and emotional landslide that affects families, health systems, and entire communities.

A recent study out of Spain puts hard numbers to that reality: each person with SPMS racks up an average of €41,500 per year (or $46,431 USD) in related costs. But the real surprise? More than half of that is due to lost productivity—time away from work, early retirement, and caregiving burdens. And it’s not just affecting those with the condition. Spouses, adult children, and even neighbors are quietly filling in the gaps—at their own expense.

Let’s break down what this means, and why it matters right now.

SPMS: The Silent Shift in Multiple Sclerosis

Most people think of multiple sclerosis (MS) as a disease of ups and downs—flare-ups, then remissions. But for roughly 70% of people with relapsing MS, the road takes a darker turn: a steady decline known as secondary progressive MS.

Unlike earlier stages, SPMS doesn’t ease up. It creeps forward, gradually eroding movement, thinking, and autonomy. By the time it’s diagnosed—often years after symptoms begin—people are not just battling disability. They’re facing a cascade of new costs.

In this Spanish study, 314 people living with SPMS across 34 hospitals were surveyed and tracked. The goal? To get a real-world picture of how much this stage of MS costs, and what parts of life are most affected.

The Big Three: Where the Costs Come From

Researchers broke costs into three categories:

• Direct health care costs (doctor visits, medications, hospitalizations): €11,300 ($11,300 USD)
• Direct non-health care costs (mobility aids, home modifications, paid caregivers): €8,800 ($9,845 USD)
• Indirect costs (lost work, early retirement, unpaid caregiving): €21,400 ($23,943 USD)

In total: €41,500 ($46,431 USD) per person, per year.

That number rivals or exceeds the annual cost of heart failure, stroke, and even Alzheimer’s care. And it underscores something crucial: chronic neurological conditions don’t just drain health systems. They reshape lives.

“SPMS hits during prime working years,” the researchers noted. “The result is early retirement, lost income, and increasing reliance on family support.”

Nearly 80% of participants had stopped working. Many needed daily help with tasks like bathing, dressing, and preparing meals. More than half paid for rehabilitation or day programs out of pocket. And nearly everyone—patients and caregivers alike—reported lost time, energy, and leisure.

The Steepest Price Is Paid in Time

Let’s zoom in on caregivers for a moment. Roughly two-thirds of patients in this study needed help with daily living. That help came from unpaid family members 62% of the time. These caregivers provided, on average, over 130 hours per month—essentially a second full-time job.

And yet, none of that labor appears on a hospital bill.

It’s part of the invisible economy of chronic illness. When care shifts from hospitals to homes, the burden shifts too—often without training, support, or compensation.

The Disability Spiral: Why Early Action Matters

The study also found a clear trend: the more disabled a person was, the higher their total costs. Those with severe disability (EDSS score 6.5) incurred nearly €46,300 ($51,802 USD) per year, compared to €34,800 ($38,936 USD) for people with moderate disability.

This pattern highlights an important opportunity: intervening earlier in SPMS could save money—and preserve quality of life.

Delaying disability progression, expanding access to therapies, and supporting caregivers aren’t just compassionate—they’re economically smart. Yet in Spain and many other countries, treatment options for SPMS remain limited, especially if a patient lacks inflammation-based symptoms that qualify them for disease-modifying therapies (DMTs).

“Many participants didn’t receive any active treatment,” the study authors noted, citing a gap in available care pathways.

The Public Health Takeaway: Rethink What Care Costs

This isn’t just about Spain. Across Europe and North America, the true cost of MS is chronically undercounted, especially in its progressive form. That’s because most health cost studies look at hospital bills and prescriptions—but leave out early retirements, caregiver strain, or missed workdays.

From a public health perspective, this study reinforces a call for action on multiple fronts:

• Expand early intervention strategies to delay or prevent progression to SPMS
• Reimburse non-medical supports, such as home modifications and caregiver stipends
• Invest in caregiver health and training, recognizing them as part of the health system
• Collect better data on progressive MS across age groups, regions, and health systems

What’s Next? The Case for Smarter Support

If we want to reduce the burden of SPMS—not just on patients, but on entire economies—we need to rethink what support looks like. That means:

• Recognizing the hidden labor of caregiving
• Offering flexible work accommodations for people with MS
• Funding more SPMS-specific treatments and tracking their outcomes
• Designing policies that prevent disability before it begins

Because in the end, the goal isn’t just to spend less. It’s to help people live more.

Join the Conversation

• How does your community support people living with chronic neurological conditions?
• What kinds of caregiver support would make the biggest difference in your experience?
• Should health systems include unpaid labor in cost-of-illness calculations?

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