进行性脊椎性质肌肉萎缩

来源: 2019-10-12 08:40:47 [旧帖] [给我悄悄话] 本文已被阅读:

 大家好,有个国内的朋友托我询问一下,关于“进行性脊椎性质肌肉萎缩”在加拿大可以医保免费治疗的事。

这是他的原话:“是关我的孩子,他20岁。我目前了解到的信息是加拿大可以医保免费治疗(今天病友群里有一个在加拿大魁北克留学的学生,20来岁,自己患病,今天免费打了一针天价药)。我在想如果当地人或移民人,哪怕当地的福利机构可以帮忙的话我可以把我儿子送给他(领养性质),对我而言小孩活着最重要。如果不愿意养的话,我可以把我每年的工资全部给他(假装领养),只要每年去一次打一下针就回来。这是我孩子目前唯一生的希望了。”

且不说领养等等是多么不着边际的事情,我还是在这里请教一下各位,你们有什么信息,或者看法和建议。
我古狗了一下,打一针确实是天价:The cost of the drug is very high, as can be the case with treatments for rare diseases. In the U.S., the company that makes the drug, Biogen, has submitted the price at US $750,000 per patient for the first year.
朋友他孩子得的是type 1 SMA:Spinraza was approved by Health Canada in 2017 and in October 2018, provinces announced they would cover the cost of the treatment for those with Type 1 SMA.
As for those with Type 2 and 3, it is up to each province to decide if it wants to cover the drug under its own provincial health plan. In December 2018, the Quebec government announced it would cover Spinraza, but as of right now, Ontario does not cover the drug.