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    • #17764
      Jenny Livingston

      Yesterday, I spent a total of nearly 5 hours on the phone dealing with health/medical/insurance related issues. At one point, after an already extended wait time, an operator answered and informed me that my call was now 81st in line and that my expected remaining wait time was just 129 minutes. If I didn’t laugh, I would have cried. This is one of the aspects of CF that I find particulalry burdensome. The administrative, behind-the-scenes type of work can be so wearying.

      The good news is that I finally made it through the network of telephone lines to find a satisfactory answer to one of my questions. The bad news is that I have several more calls like this one in my near future. It seems like there has to be a more efficient and consumer-friendly way of operating some of these very helpful, very necessary programs! At a CF conference a couple years ago, I learned of a gentleman who spent a combined total of 26 hours on the phone in order to get a single prescription refilled!

      Do you have any horror stories similar to this one? Long wait times, unanswered questions, or misunderstandings? (Like the time the specialty pharmacy tech mispronounced literally all of my medications and proceeded to tell me that she thinks her nephew had cystic fibrosis once.)

    • #17768
      Paul met Debbie

      Yes, this is frustrating indeed, Jenny. It shouldn’t be like this. My mother taught me that we should always only talk to the highest executive possible (“I will call the CEO”). In those days she often succeed swiftly (being very persistent). As a little boy I heard her do this and was mesmerized by the process. And I learned from it. But it gets ever more difficult to talk to those who really can make the difference, because they are fenced off with call centers and layers and layers of little “helpers” that are not helpful in many cases at all.

      This is already a burden if it only concerns trivial things like sending back internet purchases that don’t work or fit, but it becomes suffering when it concerns important things like our own health or that of loved ones. Government and important other institutions hide themselves behind walls of technology and bureaucracy ever more.

      There are two solutions. On is practical, one is fundamental.

      Practically, sometimes I grab my pen (or pc) and write a letter or e-mail to the highest authority of whom I can find the address. Surprisingly, this often works and I find it less frustrating than waiting shackled in a phone-call line. These are the rare occasions that I still use my law-title when signing, although I am not at all sure if this is conducive or not.

      Recently I felt worried because Kaftrio is still not allowed for reimbursement in the Netherlands. The minister is negotiating about this since April and still no sign of any agreement is heard. I wrote a letter to him personally last Monday and it will be published shortly, perhaps even today, with help of the Dutch CF foundation. I hope it helps. I will post a link to the publication as soon as I can provide one.

      These initiatives take time and effort as well, but they take frustration away (temporarily, the real work one has to do in confronting ones own mind). So I would not compare this to your arduous phone calls in any way.

      Nowadays I have pretty short and accessible lines to the institutions I need. And my health insurance is reasonably accessible via internet, and most things go well on their own. I remember times this was not the case and I had to talk the hind legs off a Donkey to make my point and plead my case. Sometimes successfully, sometimes not. So, I feel your pain.

      Now, the only fundamental thing to do always is accept the situation fully, and clean the mind from any expectation or frustration. Don’t even think of the outcome, just go through the motions and see what happens. Watch yourself from the position of the neutral observer. If not successful, at least you did your thing and you never know what the optimal outcome actually is (remember, “perhaps”?). The relief you feel after the successful phone call seems to come from achieving the result you craved for. But actually, looking closely at the mind, you will find out it comes from the (short-lived) cessation  of the craving itself. If you don’t attach yourself to an outcome, there will be no craving in the first place. This is the direct way to liberation. In my case: I sent the letter and it is in the universe now. I have detached from any specific outcome. The sending of the letter IS the outcome, and it has already fully fulfilled its potential, no matter what comes from it.

      Hope this helps a bit.

      • #17770
        Paul met Debbie

        A few hours ago the minister of health presented a statement in which he said that, as of January 1st 2022, Kaftrio (Trikafta) will be incorporated in the national health insurance system. This means that about 1000 persons with CF in the Netherlands will get free access to Kaftrio very soon!  We are over the moon with this development.

        Although the letter I wrote was not yet published officially, the universe works in mysterious ways for sure. We have no clue at all.

    • #17771
      W. Hoh

      My son has cystic fibrosis so I’ve spent time on the phone with private insurance companies as well as Medicaid. I’m a disabled veteran and rely upon Medicare and the VA system.

      What you experienced was the end of the year rush that insurance companies have to deal with, when people are trying to “get their medical care in” before their deductibles and out-of-pocket maximums reset on December 31st.

      Everyone tries to get medical procedures during Dec. and there are Insurance questions regarding what facilities are covered, how much will a procedure cost, do they cover the procedure, Etc. It gets even worse in another week or two.

      I worked at a health insurance company so I know.

      I thought I understood health insurance but I had to reach out to CFF COMPASS for help on several issues. You can get in touch with them through sometimes you’re just too sick to deal with the insurance company and need some help and that’s okay.

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