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When it comes to Spinraza, what are you waiting for?
Although many of us have started Spinraza treatments, there are plenty of you who have not. I’m curious as to why. Is it not available where you are? Are you battling insurance? Are you hesitant for one reason or another? Are you waiting for upcoming alternative treatments? Do you think it’s not worth it? I’d love to start a dialogue to discuss this topic.
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2 Replies
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I definitely had reservations at first. Obviously I liked the idea of my SMA not progressing anymore, but I still wondered if the whole process would be worth it. Four injections back-to-back, and then one every few months was pretty daunting. There was also the possibility of complications with the procedure, and I was just anxious about it all. So I get why many adults either wait or take a while to decide to go through with it or not. It’s a lot to consider.
Ultimately I’m glad I did it, but it really is a personal decision when you’re an adult. What about everyone else here?
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I’ve heard through the grapevine that access tops the list as to what’s holding people back. Some countries don’t have access, while others are putting age and type restrictions on who can receive it. Even in the US where there instances where access is an obstacle. Either with getting approval or finding a facility for treatment. My best advice is to be patient yet persistent.
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