CLL Support Association

This is my rant for the day

Today is my first day without taking Ibrutinib since April 2, 2017. Last November my company made the decision to change insurance providers. Meanwhile, in late November when I received my December supply of IB I noticed the pharmacy had slipped a yellow piece of paper with a note reminding people with insurance changes to call asap to get insurance information updated so there wouldn't be any interruption in the distribution of IB.

After open enrollment was completed we received our new insurance cards. The day after receiving my card (December 20th) I called the pharmacy and provided all of the required insurance information. And, I assumed that I'd done my part.

On January 16th I received a call from the pharmacy and scheduled a day for my next 30 day supply of IB to be delivered on Friday. However, the next day I received another call from the pharmacy reporting that my insurance company had not approved this prescription. They told me they'd contact my insurance company and get the situation resolved.

On January 23rd I received another call from the pharmacy to schedule my delivery for Friday the 28th. On Thursday the pharmacy called to tell me that my insurance company still hadn't approved my subscription.

My next step was to call the insurance company to figure what was going on. The pharmacy services support person reported to me that they hadn't received any notification/request from my doctor. So, I asked her if anybody had taken the time to contact my doctor? She said no, that hadn't happened yet. She then put me on hold and contacted my doctor's assistant.

Later in the evening my doctor called me to let me know all the required paperwork had been completed and submitted to the insurance company. He also told me that I would have to go several days without IB.

My experience with CLL is that I have no control over how this disease is going to behave. This experience reminded me that while I thought I'd done everything necessary that I have no control over whether or not people on the other end are going to perform their jobs.

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Patients shouldn't have to work so hard to insure that everything is in place, but it seems that it often falls to us. When I had an HMO they changed how I got my IVIG. I used to spend three days on the phone (really, three days every month, all day long) going in circles with the insurance company, the speciality pharmacy, and the infusion center. I knew the head supervisors of all three really well. I hope your Ibrutinib comes soon!

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Constantly surprised by ‘professional’ ineptitude - I know nothing about CLL ( apart from having it) - which seems to be vastly more than most people treating me for the disease 🤪

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In general, I have found dealing with the insurance companies to be an ordeal worse than the disease itself.

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Hi Pilantd

You have come so far since you were diagnosed and joined us, sorry to hear the frustration and upset that others not doing their job has caused you.

Do hope this is soon resolved and you can get your ibrutinib. You are such a positive voice here that you are entitled to a rant.

Good luck and best wishes

Bubnjay1

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I feel your pain. I’ve been dealing with a specialty pharmacy that is so inept. They let money run out in my Pan Foundation account. I have to appeal it. Can someone tell me why Ibrutinib has to go through a specialty pharmacy? Why can’t we receive it through our regular pharmacy and pharmacist that I trust? Thanks. Sally

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The irony of it all is that the person who feels least able to communicate in times of fatigue, anxiety about doing your part to take the meds and whatever other meds in the right manner to make it all work and whatever side effects are going on, is the one who has to do all the negotiating.

I am wondering, is there someone in your work who can handle such for you—since the workplace holds the premium and made the switch, could there be a go-to person to intervene?

Your plight at the point is not going to be too unusual for some of us. The insurance/pharmacy/hospital moves that are happening to get some control of the medicine costs is underway according to a NYTimes article I read recently.

Who knows what that might entail for the patient who is not involved except at the usage end—the purpose for which each of those entities were formed and have their being.

I hope your situation gets resolved without any gap that would cause you any loss of efficacy.

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UPDATE: The insurance company called me at 8:35 am PT to let me know my prior authorization has been granted. Maybe the IB will be here by Friday...

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So glad to hear! Good luck to you.

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OMG..So glad to hear of the positive outcome! I had an upper endoscopy and my CLL Specialist told me to discontinue my Ibrutinib for about half a week, so I guess as long as it's a brief time, it should be ok (plus our liver probably appreciates it...lol!)

Congrats!

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I'm concerned about the consistency of taking IB. Over the first 6 months I learned how important it was to drink 64 oz of water per day and take IB within a 2-hour window. This is my 2nd day without IB. My absolute Lymphocyte Count has only been within normal since early December 2017. I anticipate there will be at least 4 more days w/o the drug. My next check-in with my doctor is February 9th. After I resume the treatment all will probably be well...I'll let you know...

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I've been told of folks on Imbruvica with reduced dosage and still having good numbers. The drug makers position seems to be that long term data on reduced dosage doesn't support this. Certainly makes sense from a corporate income rationale. I don't think a short break in taking Imbruvica will be detrimental

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Not to worry you will be fine. I had to stop my IB for a week because I had to have surgery. Expect your numbers to change a little but they will go back with no problem. So glad you got it all worked out. Also, I've had the specialty pharmacy deliver them next day, see if it's an option for you. Good Luck.

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Insurance companies in the U.S. have a mission--to slow down or deny paying claims--period. Their real priority is delivering $$ to their shareholders.

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I'm sorry you have had insurance problems to deal with on top of the normal stresses that go along with the disease. An insurance company's formulary can change from one year to the next which can cause changes in coverage too. In the U.S. there is a saline solution shortage right now that has many of us unsure if we will be able to get our next treatment. Gazyva must be administered in the solution, unlike other drugs that can be administered directly or in another form. I've been lucky so far (but just) and hope the factory in P.R. Is up and running soon.

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UPDATE: My shipment of IB arrived today. The pharmacy sent it overnight via FedEx. Thanks everybody for your support.

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Perfect example today.

Had blood tests first thing.

Saw the haematologist before my infusion. Good news was my lymphocytes count was down to 14 but my platelets were down from a high of 300 to double figures ( over 18months I hasten to add) He then proceeded to bombard me with other problems - excessively high calcium, possible other viral infection caught from my time in hospital - more blood tests, more waiting for results. More apprehension as to what stage has it moved to. Only 3 months ago they said I wouldn’t need chemo for several years. My head was not on straight, as I was thinking of how to put it to my family

- that the CLL was marching ahead of schedule - but there was nothing to worry about - my wife knows if I say ‘there is nothing to worry about’ that is BS. I go for infusion, the girl next to me is having platelet infusion - so I want to ask my 3rd haematologist in 4 appointments whether this would be the next stage for me. He was unavailable - so I asked the nurse who looks at me blankly- she said “your platelets Count were 156 first thing & 158, later in the morning”.

All that head fuck over nothing - haematologist must have had someone else’s results!!!!

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Gosh that’s poor. Definitely rant worthy :-(

Peggy

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