Kalydeco: The Hope Diamond??

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!!