Orkambi – Rejection, Appeal, and Life in Between

Here’s my first update since/about Orkambi, the new medication designed to improve the quality of life for a large percentage of Cystic Fibrosis patients.

My CF clinic sent the prescription to my Health Insurance provider, but they have rejected the pills based on need for proof that I…

A. Have CF,

B. Have the correct CF mutations,

C. The doctor prescribing the Orkambi is a CF specialist.

In the past two and a half weeks, there have been at least 10 phone calls and emails trying to move this process along. While I was on the fence in the beginning, unsure that I would take Orkambi, after getting sick again, and my doctor threatening to put me in the hospital a month ago, I started praying that I would be able to do everything possible to get approved.

I got through that exacerbation with 2 oral antibiotics. I was happy. I also saw my CF clinic and had my lung function tested – it was high enough that when I (presumably) started Orkambi ASAP, any side effects would be obvious, because I wasn’t sick at the time.

Now, as I watch my email inbox, make phone calls, and stalk my postman, I feel more and more that I want…I need…Orkambi.

But Wait, There’s More

I started to get sick again.

  • Productive nighttime cough
  • Fevers
  • Difficulty keeping up my oxygen saturation (I have no oxygen at home.) When asleep and after physically exertion, my oxygen saturation levels have dropped.
  • Walking up the stairs takes twice as long.

Now… It’s not emergent – I am not in respiratory distress, but they if they stay below 90 for any period of time, I will neeed oxygen.

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If my symptoms collectively worsen, I will have to call my clinic and most likely will be placed in the hospital.

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My fevers are relatively low, but still bothersome – and make me feel achy and tired!

Please pray, cross your fingers, or send your positive thoughts out into the universe that I have the courage and patience to do what I have to do should I go in the hospital, that my doctors have the wisdom make the best decisions possible, and that while I continue to fight for Orkambi, I will continue to hear all about all of the other CF patients who are taking the closest thing to gold we’ve ever had.

Until then….tell me about your Orkambi adventures, good and bad!!

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4 thoughts on “Orkambi – Rejection, Appeal, and Life in Between

  1. As you know I was on the study and didn’t continue to the rollover portion. Well I did for about a week then quit. I decided to give it a try again now that it’s approved. I think it was bad timing for me to have been in the study as I had just moved to TN and my lungs were still getting used to their new environment. The feeling like crap the first few weeks of taking it are true. I had it all during the study. When you do get it, don’t give up on it too soon if you feel like crapola! Hopefully you can feel “good” again, I know term is used lightly. Hugs Cyster!

      • If I remember correctly, I felt like crap the first few weeks. I haven’t started it yet. It’s sitting on my counter but I haven’t felt the greatest so I’m waiting to start it until I feel a little better. I don’t want to have the crappy feeling from starting the med and not feeling good in general.

  2. Hope you are hanging in there! Hospital stay may help kick this so you feel better. Hugs from KC! CF sucks. My son just got Orkambi today, expect to be sweating and coughing for the next week or two and are hopeful it can help. Hope they figure it out and get you approved. We had a LOT of phone calls, extra approvals and such to get here.

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