It’s news to no one that MS is hard. There are medications of all kinds that are supposed to make it easier. Yet even if they work they make our lives more difficult.
Many are way too hard to pronounce.
Case in point: Ampyra. Looks easy but no one can agree on how to say it. Is it am-peer-ah or am-pie-rah? A representative of Acorda (I know how to say that. Go figure.) was at a symposium not too long ago so I posed the question to her. She was non-committal. She was good with either one. I guess if we’re shelling out more than a grand a month for it, we get to call it anything we want.
Not good enough! There is so much uncertainty with MS, pronunciation of the drugs should be cast in stone. And easy! One less thing to worry about.
The newly approved Ocrevus is a nasty one. Is the “e” long or short? Is the emphasis on the first syllable or middle? Or (heaven forbid) last??? :-O I struggled with Tecfidera for weeks until I got a definitive pronouncement on that one. I’m still not confident about it.
And what about the rest of them: Tysabri, Mitoxantrone, Gilenya, Plegridy, and so on? I only remember Lemtrada because it sounds like the “Forbidden Dance”, the lambada. Is that a coincidence? Here’s one I’ve never even heard of: Zinbryta. No way I’m even trying that one. It sounds like it has to be prescribed by Dr. Seuss.
Give me Aubagio any day. It rolls off my tongue because I’m Italian and it sounds like something from a menu at an Italian restaurant. (“Hey, paisan! You want a side of Aubagio with your pasta fagioli?”)
Add “confusing pronunciation” to the lengthy list of side effects for these beasts.
In the spirit of practicing gratitude as a therapeutic approach to MS, I suppose I should be thankful we aren’t saddled with the scientific names. Would you want to ask your doctor for teriflunomide, glatiramer acetate, or alemtuzumab? So if you’re changing the name anyway, why not go with something simpler, say, Smith, Lorp, or Flant? True, they mean nothing related to the medicine’s purpose or composition, but can anyone tell me what information Extavia gives us?
Look, we already have to deal with words like exacerbation and subcutaneous. Why not cut us some slack on words you’re making up?