Helpful Health Insurance Exists! – Family Heart

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

Why insurance finally approved my Praluent prescription

I feel like I should have written these entries as part of a series: I should have named them all the same thing and then given them an episode number. But I didn’t. Who knew it was going to become such a saga?! If you are just now finding out about my struggles to stay on Praluent, due to my insurance denying my refill last year, then you must read the previous entries. They are, in order:       I suggest that you would read them in successive order, just to understand the whole story, as it progresses. First, I was denied when I needed to refill my prescription (please keep in mind the word “refill”: I had been approved by my insurance to take Praluent; but when the authorization needed to be renewed, after 6 months, I was denied); then, my nurse appealed the decision, to no avail – I got denied again; and lastly, I appealed their decision one last time and they eventually approved the refill, 6 weeks from my original request for a refill. All the details of what happened are in those three entries. If you are riding this roller coaster, as well, please read them and maybe some things will be helpful for you. But also, read on … Just to be clear: patients of FH for whom statin therapy is not enough, or Homozygous FH patients, or FH patients who are allergic to statins depend on drugs like Repatha or Praluent (PCSK9 inhibitor drugs) to keep their cholesterol levels low. To some of us, this can be the difference between having a heart attack and avoiding one. So, if these drugs work for you, you want your insurance to keep them on their formulary and you want them to keep giving them to you. They are insanely expensive, so the insurance’s help with paying for these drugs is paramount to being able to continue the therapy. After my insurance approved my refill, I thought that was the end of my interaction with the insurance company and with the Specialty Pharmacy which is the entity that actually manages the filling of the prescription. But I was wrong. As I mentioned before, the Family Heart Foundation ( has reached out to me and wanted to investigate further into what happened with this refill. They work with various insurance companies to smooth out the process for patients that need these drugs. I can tell you I was not alone: several people that read the FH Facebook post mentioned that they had the same experience as mine, where they get approved the first time, and then the refills are problematic. My own cardiologist said that about 80% of his patients get denied for a refill and he cannot figure out why. Well, after talking with the Family Heart Foundation folks, they put me in touch with a person from my own health insurance who was investigating how they can improve this process for us, FH patients. He emailed me, and asked me a few basic questions about my account (name, date of birth, etc) and then he dug up my file and my history of requesting a refill. After several weeks of digging, he and a manager from the Specialty Pharmacy (you are always dealing with the reps from the Specialty Pharmacy when you fill this prescription) had a conference call with me to talk about what happened. I went over the story, but it was fast apparent to me that they knew what the story was: I called in for a refill, was told that one would not be allowed without a pre-authorization; my nurse was required to fill out a form to require pre-authorization, and that was denied. Twice. Then, I filed one last appeal, and the insurance magically pre-authorized me for my refill. To my surprise, the insurance company person as well as the pharmacy manager admitted that what happened was a series of mistakes on their end. The whole time I was calling and placing the order for a refill, they were treating me as a new case, not as a pre-approved case who just wanted a refill. When they did that, they also faxed the wrong form to my nurse: they faxed a form where they ask for all complete records that prove that I have FH. My nurse was half-completing that information, because she was assuming (like me, too), that she had already filled all that information out the first time she asked for the first approval and that the insurance company already has the information they need. But they needed that whole information thoroughly completed again, because in their mind, I was a new patient. This was a mistake made by the people working with my doctor to file the request for the pre-authorization. According to both the insurance company and my Specialty Pharmacy, when you file for a refill, they require one form with just two questions on it: what was the LDL before therapy and what is the LDL now?! If they see that it dropped (and in my case, significantly), then they approve the refill, because they think the drug must be working. If not, they won’t approve it. They don’t need any of the previous information, about your family history, or your own history of CVD, or your previous and current medication, etc. They just need the doctor’s office to tell them those 2 LDL levels and based on the trend of the numbers, they stop your therapy or continue it. The people I spoke with apologized profusely and thanked me for being willing to help them “discover gaps in their process and training” so that they can fix this and so that no other patient should encounter this problem again. They also told me, quite surprisingly, again, that their full intent is to keep people like me on therapy, and not make them stop or skip the therapy. If you think about it, as expensive as these drugs are, they are still cheaper than paying for a heart attack or a stroke. So, it is in their interest, too, to keep us on the drugs. I asked them what made them approve my last appeal and what made them investigate this case in particular. They said the appeal was approved because with the papers that I sent and the clear letter explaining my plea, they could tell right away that the Specialty Pharmacy reps were not listening to me. I asked if my doctor intervened more, and they said: “No. The only thing that approved your pre-authorization was your paperwork, that you submitted with your appeal.” In that, I added tons of documentation to prove my condition, medical history, my history with them, and I clearly stated that this was for a refill and not for a first time approval. When the appeal department got that, they approved it right away. You can read in this blog entry ( what all the papers were that I sent in with the appeal. This conference call was the first time in my life, possibly, when I was not frustrated and exasperated, after talking with an insurance company. I was really grateful that they took the time to investigate and they discovered the mistakes in the process, and owned up to them. Hopefully, lots of people like me will have better experiences in the future. My next pre-authorization is required again in August (after 6 more months since last time), but after that, it will only be required once a year, instead of every 6 months. I will definitely report back with how that next step will go. So far, all the monthly refills have come in pretty painlessly. Another thing that I found was that the Praluent manufacturer is actually paying my copay, as I have yet not gotten a bill for this year’s refills. They explained that sometimes, before they bill me, they look to see if the manufacturer offers a copay card. If they do, they apply it to my balance, and it just so happens that what they offer covers my balance. The manufacturer has never reached out to me, nor has it sent me any notification that they would be doing this. This has been completely behind the scenes, between the manufacturer and the health insurance. They mentioned that my insurance does not accept a copay card from all manufacturers, but they do from the maker of Praluent, as this is a preferred drug for my health insurance. Both the insurance liaison as well as the pharmacy manager shared their contact information with me, so that I can contact them directly should this happen again. As I mentioned before: this has been an out of the ordinary experience with a health insurance company. So far, I have been pleasantly surprised by this follow-through and attention to details. Let’s hope this holds and not just for me, but for everyone else struggling to get through to these institutions. Please comment if you want additional information on what I have submitted, or if you have more questions about my interaction with the insurance company, the Family Heart Foundation, or anything else. I’d be happy to help. Easy journeys to all of you, and to all: much health! To view original post visit: 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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