Caveat: this is not the norm!
I have talked about this before (https://livingwithfh.blogspot.com/2017/04/a-helpful-health-insurance-alas-there.html), and as anyone taking Praluent or Repatha knows: ordering a new prescription or even a refill can be a pain in the rear-end. You always get denied by the insurance, always turned around, even when you know your reasoning for asking for these drugs is legitimate. They don’t seem to care. It’s not the first time when you realize that health insurance companies are not in the business of saving lives, but in that of making money. Pretty much a platitude, right?!
So, when it was time for me this month to renew my Praluent (this would have been my third renewal), I started an online journal. I wrote down the name of every person I talked to at the insurance company, at the specialty pharmacy, at my doctor’s office and I was prepared to document every step of the way so I can show someone, anyone, where the process seemed to have been broken, should I be denied.
I took very detailed notes. I talked to the insurance first. They told me they cannot, by law, call my doctor; that they make up the list of questions / reasons for which I should be on Praluent, and that I have to call my doctor myself and have them write up this note with all the reasons that are approved by the insurance of why I should be on it. Then, the doctor has to fax this note to the insurance company. Then, the doctor has to also call the specialty pharmacy. When the pharmacy gets the call from the doctor that I was prescribed this drug, they cannot fill it unless the insurance approves that prescription. So, the pharmacy would call the insurance and the insurance would have had the questionnaire filled out from the doctor’s office and would give them the OK (based on what the doctor answered) to fill the prescription. Or … they would deny refilling it.
If your head hurts, it should. The process is a spiderweb of convoluted bureaucratic loose ends and it is not designed for ease of access.
This year, I am also in a new state, and have a new cardiologist who is not the cardiologist that originally prescribed Praluent to me, two years ago. So, I was doubly nervous: I had to renew my prescription (so, renew, after originally having been approved) twice before and I was denied several times before during the renewal process. I knew this time would not be any different. Plus, not really being familiar with the staff of my new cardiologist, I was even more nervous that I would get denied so many times, an appeal would not even be possible anymore.
But sometimes, by the grace of Karma, or God, who knows?!, our worst fears are not met. I went to my new doctor and explained the maze to him. He smiled and told me to not worry about it, that the process has become easier over the years and a renewal is much easier than ordering a new prescription. I was dubious. I gave him the list of questions that the insurance needed answers for with the fax number for my insurance. Then, I gave him the phone number of the specialty pharmacy saying that I needed him to order the drug from the pharmacy. I was so scared he might get the two numbers confused: the insurance needed the questions answered and the pharmacy needed the prescription. And I talked to the doctor, but I know he is not the one actually doing all this, that his assistant or nurse might do this and between me telling him and him telling her what is needed something might get lost.
When it was time for my normal refill, I called the pharmacy to see if they had received a call from the doctor yet and could they please call the insurance for the OK. When I called them they said they did receive the call from the doctor and they also received the OK from the insurance and if I wanted, they could send me the new refill in a couple of days. I asked them, still dubious, how many refills I had with the newly renewed prescription, and they said 11 – that the new prescription is valid for the whole new year. I was in awe! This had to be the easiest Praluent refill in the history of Praluent.
To the time I write this, I am still not sure what changed: either my new doctor has had more experience with ordering these drugs than my previous one and he did tick all the possible boxes requested, or the health insurance/ specialty pharmacy business has gotten a little bit less rigid? Not sure.
The couple of things I made sure that my new doctor had were:
- the results of my genetic test that shows I have HoFH
- the total Cholesterol and LDL Cholesterol numbers from before I started Praluent and the levels I am at now
- my history of CAD and heart surgery.
Now, the next big bump is renewing my benefits later this year: I am hoping that my employer will continue using the same insurance as we have now. Changing insurance companies at the end of this year would mean starting this process over with another company – and that, I know, and my doctor agreed, is much harder. Hoping for consistency going forward!
Good luck to all who are going through this process! These drugs have been a real live saver for me!
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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.