Hey everyone,
So today my sister texts me (during her workday, which is odd) to tell me that her friend had just emailed her an article about a new drug, called Kalydeco, that was just approved to treat CF. So my sister was texting me with the thoughts/hopes that this new medication would help me, and I would be getting it any day now. And obviously her friend thought that I was basically cured after reading this article. Ummm........no. I figured neither one of them must have read the article thoroughly, and/or they just didn't understand the part about only being approved for the G551D mutation, which only accounts for about 4% of the CF population. So after explaining all of that to my sister, she emailed me the article and said she was frustrated because the article didn't mention anything about that. After reading for myself, it, in fact, makes no mention of only being approved for one mutation and that very few patients are actually getting to use it. It makes it sounds like Kalydeco is approved for anyone over the age of 6. Ugh. To clarify, I'm aware that technically anyone can use it, but it would be "off label" and most insurance companies aren't paying, and that's IF you can get your doc to write you a script (I can't). Anyway if anyone is interested, here is the article:
http://abclocal.go.com/kabc/story?section=news/health&id=9045126
Interestingly enough, at the end of the article it states that the little girl is using if "off label" but the average reader would have absolutely no clue what that means.
I guess what frustrates me is people reading this and assuming that everyone with CF is benefitting, and having CF is like a cake-walk now. Also the fact that it can give false hope to friends/family, as it did in my case. My sister was pretty let down to hear that it's of no help to me at this point in time, maybe never if it doesn't get approved for one of my mutations. It's also a little weird because it makes it sound like it was JUST approved, when in fact it was approved months ago (or almost a year now right?). I guess I'll just chalk it up to a poorly written article and move on.
Autumn 32 w/CF
Disclaimer: I am BEYOND excited for the people that Kalydeco is helping. This is not to take anything away from what it is doing for people with G551D and people who are getting it off label.
So today my sister texts me (during her workday, which is odd) to tell me that her friend had just emailed her an article about a new drug, called Kalydeco, that was just approved to treat CF. So my sister was texting me with the thoughts/hopes that this new medication would help me, and I would be getting it any day now. And obviously her friend thought that I was basically cured after reading this article. Ummm........no. I figured neither one of them must have read the article thoroughly, and/or they just didn't understand the part about only being approved for the G551D mutation, which only accounts for about 4% of the CF population. So after explaining all of that to my sister, she emailed me the article and said she was frustrated because the article didn't mention anything about that. After reading for myself, it, in fact, makes no mention of only being approved for one mutation and that very few patients are actually getting to use it. It makes it sounds like Kalydeco is approved for anyone over the age of 6. Ugh. To clarify, I'm aware that technically anyone can use it, but it would be "off label" and most insurance companies aren't paying, and that's IF you can get your doc to write you a script (I can't). Anyway if anyone is interested, here is the article:
http://abclocal.go.com/kabc/story?section=news/health&id=9045126
Interestingly enough, at the end of the article it states that the little girl is using if "off label" but the average reader would have absolutely no clue what that means.
I guess what frustrates me is people reading this and assuming that everyone with CF is benefitting, and having CF is like a cake-walk now. Also the fact that it can give false hope to friends/family, as it did in my case. My sister was pretty let down to hear that it's of no help to me at this point in time, maybe never if it doesn't get approved for one of my mutations. It's also a little weird because it makes it sound like it was JUST approved, when in fact it was approved months ago (or almost a year now right?). I guess I'll just chalk it up to a poorly written article and move on.
Autumn 32 w/CF
Disclaimer: I am BEYOND excited for the people that Kalydeco is helping. This is not to take anything away from what it is doing for people with G551D and people who are getting it off label.