進行性脊椎性質肌肉萎縮

來源: 2019-10-12 08:40:47 [舊帖] [給我悄悄話] 本文已被閱讀:

 大家好,有個國內的朋友托我詢問一下,關於“進行性脊椎性質肌肉萎縮”在加拿大可以醫保免費治療的事。

這是他的原話:“是關我的孩子,他20歲。我目前了解到的信息是加拿大可以醫保免費治療(今天病友群裏有一個在加拿大魁北克留學的學生,20來歲,自己患病,今天免費打了一針天價藥)。我在想如果當地人或移民人,哪怕當地的福利機構可以幫忙的話我可以把我兒子送給他(領養性質),對我而言小孩活著最重要。如果不願意養的話,我可以把我每年的工資全部給他(假裝領養),隻要每年去一次打一下針就回來。這是我孩子目前唯一生的希望了。”

且不說領養等等是多麽不著邊際的事情,我還是在這裏請教一下各位,你們有什麽信息,或者看法和建議。
我古狗了一下,打一針確實是天價: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.