I run patient group in Toronto for people living with CML. Recently, the CML community has been dealt two significant blows.
The first was in June when the patent for Gleevec expired, opening the door to two generic drugs. At about 20% of the cost of Gleevec, it all sounds good - if only the generics were the same. How is it that these generics received Health Canada approval, despite the fact that they are based on a different formulation of the brand?
And in case you are wondering what the big deal is about a different formulation... From the patients I have spoken to who have been switched to the generic, it is all about awful side effects. Side effects today, loss of response tomorrow?
The second blow I just learned about last week. The other big disappointment happened this week when I learned that people living with CML are only allowed 2 TKI's in a lifetime. What?? And here I was resting (fairly) easily, reassured by the fact that if Gleevec stops working tomorrow, I still have two more get-out-of-jail cards in my pocket, plus countless others in the pipeline. Well, that bubble has burst. Turns out if you are on your second TKI, and you develop adverse effects outside of three months, you have pretty much reached the end of the TKI line. Again, I have to ask, What??
We have started campaigning the government about these two issues - I am hoping the media picks it up. Isn't it bad enough to have to deal with a cancer diagnosis? Unfortunately, if these two situations are allowed to exist, we will see a highly treatable disease become one that people may start dying from. At the very least, our quality of life will be significantly compromised.
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