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Post by darthoso on Aug 8, 2020 12:06:59 GMT -5
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Post by darthoso on Sept 20, 2020 16:03:32 GMT -5
It has actually been an interesting month in the SMA community since the approval and not what I expected. When Spinraza was approved 4 years ago the big questions were coverage, and dosing method. Coverage worked itself out eventually but spinal injections kept a lot of people from getting Spinraza. Part of that was Interventional Radiology not communicating with each other on best practices, resulting in bad dosing experiences which made people stop treatment, those bad experiences spread online and others opted to not seek treatment out of fear. I get that, every dose is its own experience and I've had 3 bad ones out of the 11. To ease my anxiety going into my last dose I specifically requested the doctor I knew was really good. So there was a lot of excitement within the SMA about Risdiplam because it is a daily mediation instead of an injection, and its coming approval further justified some people waiting to start treatment.
Then we got the approval and it comes with a possible side effect of infertility observed in some animals at high doses. A lot of parents are struggling with the moral question of giving this to their children and potentially making them infertile, less so in the adult community but some.
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Post by Green on Sept 21, 2020 12:18:19 GMT -5
Then we got the approval and it comes with a possible side effect of infertility observed in some animals at high doses. A lot of parents are struggling with the moral question of giving this to their children and potentially making them infertile, less so in the adult community but some. What do you feel about this? It sounds like a real tragedy to me that any parents feel this way about giving their children the medication. I can understand disappointment, but it doesn't seem to be much of a moral problem. I mean, I hope it hasn't done anything other than make parents hesitant but go with it in the end. |
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