If you’re having trouble paying for your MS drugs, 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 medications 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 reasonsfor this law is complicated.
Finally, posts on MS Facebook groups report that it’s becoming harder to find help paying for MS drugs 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 about paying for MS drugs?
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. Here are a few things you might be able to do to help paying for MS drugs:
- 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.
(A version of this post first appeared as my column on the MS News Today website.)
(Featured image by Clker-Free-Vector-Images from Pixabay.)
