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!!

The Daily Battles of Cystic Fibrosis

Hey guys, thanks for your continued support! I wanted to encourage you to try and watch the videos all the way through. I know I can become long winded and I'll try to make them shorter, but it's tough to squeeze in everything I want to say. I'll work on it though! But again, thanks for watching the videos at all, I just don't want you guys to miss anything! Take a look around the blog and check out all of the new features. I'm trying to make it easier for you guys to spread the word about CF and get it in front of people. I have also added some features along the left hand side of the blog including popular posts, recent comments, and my PFT history. I hope you guys enjoy all of the new stuff and as always, thank you for your interaction, thoughts and prayers.

Hope, Long-term Goals and CF

**The following is my comment on Megan's blog which I encourage you to read so that this post will make a little more sense. I would also encourage you to leave her some kind words and some advice if you have ever found yourself in the same situation. She need some support right now from people who have been in her shoes. Thank you.**

I understand the feeling of being overwhelmed by CF sometimes, but I've got to disagree with you on some of your worries. Now, first let me state that I don't know you, nor your CF, but I do know that some of the things you said aren't necessarily true.

There is no reason that you can't live to a super old age. They are making incredible progress with medicine and research and I am confident that in the next 5-10 years there will be a breakthrough. I understand that you have to be around to receive that new drug or cure, but judging from your lung function and the fact that you're able to exercise, I think that you can plan on being around. Be faithful with your treatments and exercise and you will put yourself in the best position possible.

I personally know more adult CFers that are married than adult CFers that are single. I think too many of us are caught up in this CF in the 1980's or 90's mentality. Sure, some freak things can happen, but if you are faithful in taking care of your disease, your chances of leading a "normal" life go way up. I can only speak from MY experience, but most CFers that I have known that died at an early age were often living risky lifestyles or would totally blow off their treatments. That's not to say that somebody who is not 100% faithful can't die, but we all know that it certainly doesn't hurt to take care of yourself.

I know that it can be scary, I'm not downplaying that, but maybe you can try and fail first before you give up on your hopes and dreams. Trying and failing is 100 times better than not trying at all.

I am always here if you want to bounce some stuff off of me or just need someone to listen. I really hope that you take to heart some of the stuff I have said because I see you as girl with a long, happy and productive life.

Ronnie