Multiple Sclerosis, Its Financial Impact and Helpful Resources

Not only is Multiple Sclerosis one of the most complicated and debilitating diseases around, it is also among the most expensive.

We who are diagnosed with MS often get slapped with a double whammy. We are first gutted by the news that we have an incurable, progressive disease, then we’re electrocuted by sticker shock when we learn the retail price of our disease-modifying therapies (DMTs), bewildered by what our insurance companies will cover, and either dismayed or relieved by what our monthly co-pay will be. Our disease-modifying drugs cost around $60,000 USD per year, and the patient’s co-insurance is calculated as around 20% of that, which can be about $1,000 per month.

We learn a whole new language with terms such as co-pay assistance, charity organization, specialty pharmacy, and pre-authorization; it’s a language called “Pharma-ese,” and you will, through immersion, become fluent within weeks.

But that’s only the beginning. Most of us need more than just a DMT. As our MS progresses we need to add symptom medications for things like fatigue, bladder and bowel urgency, vertigo, muscle spasms and stiffness, pain, depression, migraines, urinary tract infections, steroids, slow gait and muscle weakness, to name several. So our monthly drug costs will rise periodically, or at the very least, temporarily. Here’s a personal example: Even with insurance and the lowest possible drug co-pays, on Medicare I pay anywhere from $0 (my Tecfidera co-pay) to $2.65 for generic equivalents and $10-$22 for brands (my symptom meds), my own monthly drug costs add up to nearly $100. And I’m one of the lucky ones, footing so modest a cost. This expense will rise and fall with the addition of short-term meds such as antibiotics. Self-catheterizing and taking drugs that weaken our immune systems are two things that can make us susceptible to more infections than usual. In such cases, we might need more meds to treat the side effects of those meds. Needless to say, our drug expenditures can eat up what might be a meager income for a lot of us.

I see many questions posed on MS forums by newly-diagnosed patients that are agonizing over choosing a disease-modifying therapy, partly out of a fear of the side effects. But they express equal distress over what they’ve read is the monthly cost, and more often than not it is in the thousands of dollars, which is frightening indeed. Often people claim they’ll refuse to take any of the DMTs, citing cost as the main reason, unaware that every pharma company has a financial assistance program. For reasons that still mystify me, many neurologists or their staff offer no information about such programs when handing their patients the drug literature to help them decide on a DMT. Many new patients seem to learn it from other more experienced patients on MS online forums. For those interactions between medical professional and patient, the information gap is alive and well.

What can you do to make your neurologist appointment as informative as possible when you need information to make the best drug decisions?

Do your homework before your neurologist appointment. Go online and read up on the drug’s delivery system—injection, infusion, or pill—its risks and possible side effects, then print out the pages or take notes and bring them to your appointment.

Your doctor is a valuable part of your health care team in that s/he knows how your other meds will interact with the new med, knows what meds will aggravate your other medical conditions, and knows about your drug allergies. It’s best to make the decision with this important info and then think about whether you can tolerate an injection, infusion or pill. If you don’t think you’ll stay compliant with the dosing schedule (you don’t like needles/infusions/swallowing pills and might skip doses), discuss this with your doc as well.

Below is a list of online web pages and phone numbers for each of the DMT companies’ financial assistance programs. If you reveal your annual income to the reps you speak with, they can give you an idea whether you’d qualify for help and for how much.

Most patients qualify for at least some co-pay assistance. Putting in a little effort on research can save you a lot of worry and anxiety about the cost of your MS therapy. In the unpredictable world of MS, a little peace of mind counts for a lot.

*Resource List of Co-Pay Assistance Programs (current as of 1/23/2015):

*Pharma co-pay programs are for commercially-insured patients only. If you have Medicare or Medicaid, call the same numbers to apply to charity organizations that will fund government-insured patients. Either way, they’ll get you covered.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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