The Struggles to Stay on Praluent. And They Are Not What You Might Think.

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

Well, it was OK while it lasted. My Praluent prescription from my insurance’s ‘specialty pharmacy’ that is.

So, it went like this: back in May, I was approved by my insurance to be on Praluent (which is a PCSK9 inhibitor drug, one of the latest drugs approved for the treatment of FH when all drugs fail.) They required, at that time, proof that my cholesterol levels are not normal (they were in the mid-300 range), and that my doctor tried everything else on the market and that I am currently on the highest dose approved of all medications there are on the market, and my levels are still high. All that was documented and sent to the insurance company, and they approved me to be eligible for Praluent, based on my life-long history of FH and current (at the time) elevated levels of cholesterol.

I have received the injections monthly from them since May. For some reason, the “authorization” that clears that I should be on these drugs expired in November (so, only 6 months from the initial approval). So, when I ordered my refill for December, they told me they can’t ship it, because it needs to be approved, yet again, by the insurance company.

I asked them what that entails. They gave me a number to have my doctor call them and give his blessing that I still have to be on Praluent. My nurse called the number and she was given a fax number where she should fax the prescription written by my cardiologist, in essence, their approval that yes, I still need to be on it. This is important, because I was later told that the ‘deliberation process’ for the insurance company on this authorization is slower when the request is faxed in, rather than when it is phoned in. She did phone it in, but she was advised to fax it. This was only one kink in the many that followed during this process.

So, the nurse faxed the doctor’s approval that I need to be on this drug. The insurance company denied it. I didn’t know this and she didn’t get a confirmation or denial over the phone or fax. I found out when I called again, after a couple of days, to see if I can refill the prescription.

At that time, I asked why was the request from the doctor denied. They said because the doctor failed to file with the request my medical history and the proof that my levels are high and the proof that I have taken everything else on the market and nothing seems to work. I was puzzled. This is a refill. All this information has been submitted and approved before, in May, when they first screened me and approved me for it. If for my entire life nothing worked, and Praluent was the only thing to try … what could have changed in the meantime?! In short: once you are born with FH which is not curable by the meds on the market, as we know them, outside of Praluent … what could possibly change in 6 months?! I was puzzled. And lost. And frustrated. But insurance companies are not here to be logical. We all know that!

So, I phoned my nurse again, to ask her to please resend the papers with the proof that I am truly in need of these drugs as nothing else works, and with my numbers to see if we can get it extended for 6 more months. She was shocked, of course. She did not understand why she would have to do that again, when it was clear that with my diagnosis (FH), I qualify for this drug “for life” as she put it, just as I did only 6 months ago. But, because she wants to help, she called again. Faxed the information again.

I will save you the boredom of reading through the story of my 2 additional phone calls to the insurance company when I argued why they are not reading my nurse’s fax and why they are not giving me my December refill already. It took a week of calling back, being online for an hour and having no resolution at the end. This is for a refill, you guys, not an original approval.

Anywhoo … On December 27, I called again and they told me they denied the distribution of Praluent to me, because after checking the papers from the doctor, they decided that I do not qualify for Praluent. I asked what is the reason, they just said: ‘no reason is specified on the denial, other than you do not qualify’. I asked how did I qualify for 6 months and to tell me what changed. They denied comment. I asked what is my recourse here and they said the doctor has to file an appeal and he would be the one to fight with the insurance for this approval.

I am not about to have the doctor go through all this. I think my next step is to wait for the actual ‘denial letter’ (they normally send one) and then contact our plan administrator and see if she can fight for this.

My only guess is that my nurse sent them my latest blood tests, where my total cholesterol was 200 (much improved from mid 300’s, and almost normal, right?!), so they probably decided it’s not bad enough for Praluent. But, again, insurance companies are not here to be logical: they do not see that the only reason my cholesterol is back hovering around normal ranges is because I have taken Praluent every 2 weeks for the past 6 months! This little, tiny, insignificant detail does not cross their dirty little minds. Sigh.

So, beware that even when you are approved for this drug (and at this point, I think all of us need to go through the approval period), there is no guarantee that you will be approved forever.

Right now, my Plan B is to continue Praluent by getting it in free samples from my cardiologist’s office. I cannot help but feel like I am doing something illegal, which is totally the wrong way to feel.

I hope this is just a temporary kink in the system till the insurance companies learn how to deal with this very new, very powerful and very expensive drug. I hope they learn to see the cause-and-effect of using this drug and the need for it continuously to stay on top of our numbers, and that they revise their processes so more lives and hearts can be saved.

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Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

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