Are You Having Trouble Paying for Your MS Medications?

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by Ed Tobias |

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If you’re having trouble paying for your MS medications, you’re not alone.

I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of meds it will pay for). Or, it has decided that you must change from a brand name drug to a generic one.

Sometimes the problem is that the person with MS has begun to receive Medicare. Federal law prohibits a pharmaceutical company from helping to pay your cost-sharing costs if you receive Medicare Part D, a real shocker for some who’ve had help with these treatment costs prior to Medicare. The reasons for this law are complicated.

Finally, posts on MS Facebook groups report that it’s becoming harder to find help through nonprofit foundations, such as The Assistance Fund or the HealthWell Foundation. There doesn’t seem to be as much money available as there once was.

Sometimes the cost is life-threatening

A working paper recently issued by the National Bureau of Economic Research (NBER) uses a number of economic formulas and models to come up with a troubling conclusion: “We find that small increases in [cost-sharing costs] cause patients to cut back on drugs with large benefits, ultimately causing their death. Cutbacks [in medication use] are widespread, but most striking are those seen in patients with the greatest treatable health risks, in whom they are likely to be particularly destructive.”

They’re talking about people with a variety of ailments, but they could easily be describing some people with MS.

The researchers caution that their study only looked at increased deaths, not increased illness. Only 65-year-olds were studied, and only for one month. Yet, they write, “One conclusion remains clear: patient cost-sharing introduces large and deadly distortions into the cost-benefit calculus.”

In simpler terms, this means deciding which medications aren’t worth the out-of-pocket cost.

What can be done to help?

Among the possible solutions in the NBER working paper are redesigning cost-sharing by requiring only a low co-payment, or none at all, for proven treatments, while requiring a high co-payment for a treatment whose benefit is “ambiguous.” Also important are “individualized formularies” based on a patient’s specific health risks.

Of course, those are just a couple theoretical solutions to a very large problem. Following are a few things you might be able to do to better afford your medications:

  • Ask about cost when discussing a potential treatment with your neurologist. Frequently, it isn’t talked about, but it should be a part of your decision.
  • Be thinking about an alternative medication in case your insurance changes and your medication isn’t covered by the new company. Discuss this with your neuro.
  • Try to find a neurologist whose staff has experience getting treatments approved by insurance companies and is willing to make the effort to do that.
  • If you’re looking for a grant from a foundation, you must be persistent. When a foundation receives money, it’s distributed quickly, so keep checking every day. Nurses at the patient assistance services at pharmaceutical companies can be among the first people to be alerted when foundations refill their coffers. One helped me snag a grant a few years ago. Use them as a resource.

Do you have suggestions to add to mine? Please share in the comments below. You’re also invited to visit my personal blog at, or follow me on Facebook or Instagram.


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.


Barbara McNamara avatar

Barbara McNamara

What kind of medicare should we get instead of medicare D?

Ed Tobias avatar

Ed Tobias

Hi Barbara,

There are only two kinds of Medicare. The original kind provides hospital under Type A, doctors under Type B and drugs under Type D. Type D gives you a choice of many different drug plans. You can choose them based on cost or the drugs they cover. You can compare these plans on the site. That's what I have and what I wrote about.

Medicare Advantage wraps A, B, and D into one plan. It's less expensive but it also provides less choice. I don't know what its drug coverage is like. There's info about it on also.



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