MS Digs Deep Into the Wallet, Report Shows

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by Ed Tobias |

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Multiple sclerosis (MS) is expensive. Even with good insurance, those of us living in a country without universal healthcare have significant out-of-pocket costs for our treatments and medications. Some of these costs may not be covered at all. MS can put us into some serious debt, and it happens to more than just a few.

A new study from the Harvey L. Neiman Health Policy Institute reports that more than 75% of people with MS in the U.S. are facing financial hardship — what the report calls “financial toxicity” — due to their MS expenses.

The C.O.S.T. of multiple sclerosis

Researchers used a tool called the Comprehensive Score for Financial Toxicity (COST) to measure the financial burden that MS places on people. COST was originally designed to track this burden on cancer patients. Because of extensive treatments, high disability rates, and lost income, the financial hardship of people with MS is so significant that out-of-pocket expenses can exceed those of people being treated for cancer, the researchers said.

The study, published in Multiple Sclerosis Journal, surveyed 243 adults with MS when they visited neurology clinics. Fifty-six percent said their income had decreased since their MS diagnosis. Of those, more than 37% reported their income had dropped by more than 20%.

Sixty-seven percent said they had to alter their lifestyles because of MS expenses. About 35% reported they weren’t following doctors’ orders for medications and treatments due to their cost.

The researchers said at least one MS relapse was reported by someone who had a poor financial toxicity rating during the nine-month study.

Think about cost when thinking about treatments

“In addition to the impact on adherence, financial toxicity was associated with significantly lower physical health-related quality of life, demonstrating the broad consequences of treatment costs for many MS patients,” study co-author Richard Duszak, MD, stated in a press release.

Duszak added that the study’s data underscore a need to take cost into consideration when patients and doctors make treatment decisions.

I agree. In fact, several months ago, after a National Multiple Sclerosis Society study showed people were skipping doses of medications they couldn’t afford, I wrote about needing to know our costs upfront.

Has your neurologist ever told you what your out-of-pocket costs might be before prescribing a treatment? Have you ever asked? Would the doctor know? According to the Centers for Disease Control and Prevention, only about 20% of patients bring up cost with their doctors. Maybe we all should.

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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.


Charles Lumia avatar

Charles Lumia

It sucks for me too. I was diagnosed earlier this year and then the coronavirus happened, everything locked down, I lost a bunch of clients. It has really been a double whammy. C'est La Vie I guess.

Erik Lukmann avatar

Erik Lukmann

All too true. The financial pressure only compounds the stress of trying to manage this horrible disease.


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