Switching from Spinraza to Zolgensma?
Hey everyone, I am more and more confused and misinformed but maybe here you can give good advice. So, the background story:
I’m living in Poland (European Union). My son Alex was looking healthy for 3 weeks and then was getting weaker and weaker. Quickly diagnosed with SMA type I and he received 1st dose of Spinraza when he was 37 days old. At this moment he was 100% floppy, no strenght in arms or legs.
Tomorrow he will be 10 weeks old and 3rd dose of spinraza happened just last week. We can see he regains some motor function but his breathing and swallowing is slightly getting worse.
Getting to the point: everyone tells us to be grateful for Spinraza but we can’t stop thinking about Zolgensma. There are several reasons for that:
– slightly better results (as far as I know)
– one-dose treatment
– no future problems lumbar punction
– the stories of parents of young children show that maybe the results could be much better than on spinraza.
Currently we’re getting spinraza for free (hurray for public health care!). Zolgensma could be approved in EU at the end of 2019 but the beaurocracy will take another months. At least. And still no one is sure how will national health care approach refunding two treatments of SMA. I know that 2,1mln $ is a lot of money but nothing is impossible if you fight for your kids.
So, the questions:
In this particular situation, would you advice to switch to Zolgensma? Maybe combining two treatments or in the future replacing spinraza with risdiplam? If yes, how much should we hurry if Alex is already getting Spinraza so he is stabilized?
Please, share your thoughts. But please don’t write “get advice from your doctor” because doctors here know nothing about Zolgensma and US doctors I feel like they feel uncomfortable suggesting me expensive Zolgensma. So I’m getting no reliable information so far.