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Guest post by Angie
Who knew such fanfare could surround such a tiny bottle of
pills? I certainly didn’t, but I
do now! After I received the news that I had one G551D
mutation, my clinic sent my information along with a prescription into Vertex
(the company that makes Kalydeco) so they could begin the process of making
sure my insurance would cover the drug.
My clinic told me that it would probably take about two weeks to get
Kalydeco because of the authorization process with my insurance and the
pharmacy processing time. I had
already waited 36 years, what was another 2 weeks? Also, this wonderful news just happened to hit the day
before we were leaving on a week’s vacation… so let the party begin!
About a week after my clinic sent my information to Vertex
(and towards the end of vacation), I received a call from Vertex letting me
know my insurance would be covering Kalydeco. They also told me that my copay would be $250 for a one
month supply. Not really a
surprise as I already pay this for a couple of my other drugs. However, the case manager also told me
that with their copay assistance program my copay would only be $15 a month!! Now, I know everyone was suffering from
a little sticker shock after Kalydeco received FDA approval and we heard how
much the drug was actually going to cost.
Vertex immediately stated that no one would go without the drug. It seems they are living up to their
end of the bargain.
Once my insurance had given the thumbs up, Vertex sent the
script to the pharmacy I had chosen.
There are only a handful of pharmacies that can distribute
Kalydeco. I chose to receive mine
from the CF Services pharmacy. At
the beginning of the next week (after arriving home from a fabulous vacation!),
I received a call from CFS to verify my shipping address and telling me that I
had to sign for the drug when it arrived.
I confirmed the delivery address and was told I would receive another
call just to verify the address one more time. Were they shipping me the Hope diamond?!?! I received the second verification call
and was told my prescription would be shipped that day via overnight delivery
so I would have it in my hot little hands the next day!!
I am not an overly emotional person by any means. Some might say I’m not even a mildly
emotional person. But, the weeks
that led up to Kalydeco arriving at my door were very emotional. It was one of the most wonderful
feelings in the world. The day
that I started Kalydeco was also quite a celebration. We toasted the arrival with some tasty champagne and my
husband prepared a wonderful dinner.
I decided that I would take my doses at 9am and 9pm since you are
supposed to take it every twelve hours.
You also have to take Kalydeco with fatty food. That is not a problem for me!! My
inaugural dose was taken with double stuff oreos and milk.
Coming next week: My first week on Kalydeco!!
Note from Ronnie: If you missed Angie's first blog about discovering that she did in fact carry the G551D mutation after many years of thinking she didn't, click here. The story is quite amazing!!
