The High Cost of Living With MS

Ed Tobias avatar

by Ed Tobias |

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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.

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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.


doreen lubin avatar

doreen lubin

every word said is true however the senate,congress never pass any bill lowering drug prices because they really only care about their own pockets.

Ed Tobias avatar

Ed Tobias

Hi Doreen,

I think what you say is true for many of those in Congress, though not all. The question is, how do some of these folks keep getting elected? Sigh.


Terri Weiss avatar

Terri Weiss

Wheelchair (huge deductible)
Stairlifts (zero coverage)
Ramp van (a mere $2000 credit for disability - conversion van costs $65k or more)
Forced retirement at age 45 = 20 years of lost, ie zero, earnings
Depletion of personal savings to pay constant shortfall in disability payments
Taxis to pick up and take kids because of inability to drive
Home modifications eg ramps, grab bars, wider doorways etc (zero coverage)
Paid help to do laundry, change bedding, shop for groceries and put them away, cook and clean (zero coverage)

Price tag excluding RXs and MDs is absurdly in excess of $65,000. Very disconnected with reality to represent otherwise.

Ed Tobias avatar

Ed Tobias

Hi Terri,

Thanks for all of that detail. There's no doubt the cost of MS is much higher than $65,000 for some and I'm sorry you're one of them. There's gotta be a better way.


Penny-Marie Wright avatar

Penny-Marie Wright

Sounds like the U.K. would rather save money than help their people with MS or other illnesses have a chance at a decent life. At least here in Canada I & others have access to the drugs that may help us at reasonable cost because the government pays most of the high cost the pharmaceutical companies charge.

Paula Mieczkowski avatar

Paula Mieczkowski

Yes, I and all afflicted with MS struggle daily with financial burdens. It’s a terrible burden that we struggle with everyday. There are some ways however that I stumbled across to curb some costa. Immoral of course but in today’s economy is a necessary evil. Adult underwear, of all things. I don’t qualify for Medicaid by 50$ lousy dollars. Medicaid allows you to get them ready. I spend upwards of 120$ a month for them. Also bed pads, wheelchair pads, wipes and skin protectant. There goes my food budget and air conditioning. I miss fresh fruits and veggies. At 70 now I no longer feel the need for a DMT. Back in the day there were were only a few therapies available so I opted for Rebif and was faithful to this for many years. My progression was slow. Still is, so in my eyes Rebif was very effective. Now confined to wheelchair. Mostly because I don’t want to break a hip or anything else due to a fall. Back to my moral choice of buying adult briefs, people on Medicaid order these although they don’t need them and sell them to those of us that can’t afford them. 5$ For a bag. I can do that and buy lettuce and bananas! Why wouldn’t I? My dealer is a nice woman and my age! Senior dealer? There is whole underground that’s not involving drugs! Although now that weed is legal in most states we no longer have to risk getting laced with dangerous drugs thus eliminating addiction or worse death. I now buy it legally and take 2 hits of my pipe at 4-5 in the evening to help ease the horrendous spasticity until my nighttime muscle relaxers. Thought about going on Ocrevus as of late. Weighing the pros n cons, my age is a factor. Not going to risk the possibility of effects. My choice. Life is for happiness now. Grandkids, kids ( notice how I put grandkids first.lolo) my lover, which is amazing! Everyone deserves that soft place of acceptance and love and fun and completely being yourself in this last journey of life.

Ed Tobias avatar

Ed Tobias

Hi Paula,

Thanks for sharing all of that. I, too, depend on those briefs. (Depend on Depends. It sounds like a commercial). You're right about the cost but at least it's a tax deduction. You're also right about life being for happiness. With grandkids, kids, and a lover I think you have a lot to be happy for. So do I.






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