I realize that the research costs a lot of money but the price of Evrysdi is going to make it really difficult for many to afford this breakthrough treatment.
I stay in South Africa and except that it is not available here yet I would never be able to afford it.
Currently in South Africa our medical aid companies see SMA as ‘another genetic disorder’ and does not classify it under muscular dystrophy as the US and Britain does. This means it does not get funded under prescribed minimum benefits but rather comes off from my medical savings plan. Any treatment like physio or assistive devices like wheelchairs also comes off from the savings plan. It’s quite ridiculous actually.
I personally don’t think, and I sincerely hope I’m wrong, that our medical aid companies will cover a lot of the cost leaving many like myself and my sister who both have SMA3 out in the cold.