The High Cost of Living With MS

I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener.

The study, published in the journal Neurology, puts the annual tab for MS in the U.S. at $85.4 billion in 2019. Most of that amount, $63.3 billion, comes from direct medical costs — things like disease-modifying therapy (DMT) infusions at clinics ($6.7 billion), outpatient care ($5.5 billion), and prescription medications ($37.9 million). Nonmedical costs — such as lost earnings from sick days, early forced retirement, home modifications, and caregiver bills — totaled $22.1 billion.

With about a million people in the U.S. living with MS, that implies an excess economic burden for each of us of $65,612 when compared with a healthy person, according to the study.

DMTs are the costliest item, ranging from $57,202 to $92,719 per person with MS. Nonmedical costs totaled about $22,875 per person.

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Let’s ease this burden

“While we’ve long known MS is a highly expensive disease, this study confirms the real impact these costs have on people with MS, their families and carepartners—as well as the U.S. economy,” National MS Society President and CEO Cyndi Zagieboylo said in a press release. “Urgent and immediate action is needed to ensure the cost of care is affordable and treatment for MS is accessible.”

We probably don’t pay out of pocket for many of those costs. They may be covered by private or government insurance. Even so, private insurance can be costly, it can have high deductibles, and it usually doesn’t cover everything. We pay for government health insurance indirectly via taxes. As Zagieboylo says, something needs to be done to ease the financial impact of MS.

Let’s start at the doctor’s office

A few years ago, I wrote about the cost of DMTs, calling it “the elephant in the examining room” and suggesting that people with MS talk about their treatment costs with their physicians. Our healthcare providers shouldn’t turn a blind eye to the cost of the treatments they prescribe. They need to realize that if patients are cutting pills in half or skipping doses because they can’t afford the cost, as some have, the treatment isn’t appropriate, and some sort of treatment change is needed.

Let’s include Big Pharma

Let’s also change attitudes at the pharmaceutical companies. In a series of interviews a few years back, four pharmaceutical and biotech industry executives acknowledged that decisions about the price of new DMTs were driven, at least in part, by the price of DMTs already on the market.

“I have sat through hours of my life of countless meetings debating pricing, but really what it came down to was, ‘what is everyone else pricing; what do we think we can get for it,’” one interviewee said. An attitude like that doesn’t help solve the problem.

Let’s include government

In the U.S., elected officials have been talking for years — probably decades — about taking steps to lower the cost of prescription drugs. However, while they talk the talk, they seem unwilling to walk the walk. Let’s remember that when we go to the polls.

In the U.K., the problem is different. There, officials sometimes seem too cost-conscious. They frequently refuse to make new treatments quickly available to people with MS because they don’t think the treatments are cost-effective. The prescription medication Ponvory (ponesimod) is a recent example. Is there a way to quickly provide new treatments to people with MS while still holding the line on costs?

What are your suggestions? What’s the priority? Please share your thoughts in the comments below.

You’re invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.