A Good Time To Be Diagnosed With MS

Whew, I definitely recommend giving your feelings a little workout and taking some time to read “Walking Scarred”, Natasha Gardner’s beautiful essay about living with multiple sclerosis at 5280 Magazine, where she is an editor.

If there was ever a good time to be diagnosed with MS, it was 2013. While I was sick, the U.S. Food and Drug Administration approved an oral drug called Tecfidera. Developed from a material that was used to prevent sofa cushions from rotting, it has been prescribed for decades to treat psoriasis. MS researchers don’t know exactly why Tecfidera works, but it may suppress the immune system in a way that helps prevent or limit exacerbations. It has downsides, of course, including intense stomach cramps and extreme flushing. It can lower white blood cell count, which can, in turn, compromise the immune system. Perhaps most troubling: It costs $55,000 a year, or about $75 per twice-daily pill. (Biogen Idec, which produces the drug, has seen its stock price double since last year.) Fortunately, having health insurance means I pay just $10 per month for it. That will probably change, as insurance plans tend to do. Coupled with ancillary costs — lost wages, babysitters, transportation — MS could become an economic hardship as well as a physical and emotional one.

The money part is not the most interesting part, of course, but the rest of it makes the money stuff so damn real.

The Affordable Care Act (ACA) has been a boon to people like me. It ensures I, and others with pre-existing conditions, can switch health carriers without worrying about my application being denied or a new plan being too expensive. The ACA also means people won’t be bound to their current employers over the fear of losing their health insurance. Because of these two changes, much of the current literature about MS care and treatment is already outdated. Not only can I continue to work, but I’ll also have more control over what “work” and “insurance” might look like in two years, or 20.

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