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    • #17700
      Jenny Livingston
      Keymaster

      Tomorrow marks two years on Trikafta for me and just a few days after that, I will have been hospital-free for two years as well.

      Prior to taking Orkambi, I was being hospitalized 3-5 times a year (for two weeks each time). After being on Orkambi for a while, I began averaging just one hospital stay a year which was life-changing. But it has now been two years without an admission due to CF — a fact that absolutely blows my mind! The amount of gratitude I feel to be alive, today and always, frequently brings tears to my eyes.

      Have you or your loved one with CF been hospitalized recently? If given the choice, do you prefer to receive treatment at home or in the hospital? Does your center prefer to admit you or do they encourage you to do IV therapy at home?

    • #17703
      Paul met Debbie
      Participant

      Wow, this is great, Jenny! It brings tears to our eyes as well hearing this.

      So far I do very well on Kaftrio as well. Previous 5 years I was on non-stop antibiotics (pills) but since taking Kaftrio, all infections and inflammations disappeared magically and antibiotics are out.

      I vividly remember needing 5 to 6 IV courses per year between 2012 and 2015. It all went well, but it felt like a pernicious development nonetheless. Fortunately, these were all at home which is by far my preferred situation. My center did not have much experience with that prior, but I encouraged them to set up this system and together with the hospital pharmacy they did a great job and became ever more proficient in this. Nowadays with covid I think they are very happy to have this protocol.

      After 2015, suddenly I didn’t need the IV’s anymore (I think it was after I started taking Diclofenac) and I was back to pills. And as said, since Kaftrio pills are out as well.

      It is indeed absolutely magic what happened after Kaftrio. I hope very much that all Dutch pwcf (and all pwcf worldwide for that matter) are allowed to take it. Currently, I am on compassionate use, but the minister of Health is negotiating a price with Vertex as we speak to incorporate Kaftrio into the standard healthcare system.  Since 21 European countries beat us to this, we should be a bit ashamed of being this sluggish I think. Last week, a serious delegation from the Dutch cystic fibrosis foundation (NCFS) and several big shot pulmonologists had a meeting with the Minister, and he assured them he was pushing things as hard as he could. I sincerely hope that before the end of this year, things will be in the can and every Dutch pwcf will have access to this drug.

    • #17711
      Jenny Livingston
      Keymaster

      Paul, thank you so much. I also hope for the same thing as you! As we learn more about this drug its apparent that it doesn’t benefit everyone and, for some, the side effects outweigh the benefit. But I firmly believe that every person who has the chance to benefit from it should also have the chance to take it.

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