The Specialty Pharmacy: the Long Road of Becoming a Praluent Patient

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

Today, I wanted to outline the process I went through before I could actually buy and benefit from a prescription of Praluent, the new PCSK9 drug approved by the FDA last year, for FH patients only.

My cardiologist prescribed Praluent (in addition to Lipitor and Zetia) since April of this year (about four months ago). There is a long and convoluted process to be approved to be on Praluent, before the insurance would pay for it. And even after that, there is another long process to actually get it delivered. But let’s not jump ahead.

My cardiologist is also the head of the research center in my state for these kinds of drugs, as he is a lipidologist, as well. So, he and his staff know all the procedures they have to follow to get this approved for the patient. They have to fill out forms that ask many questions about my medical history and what other drugs have they tried and which failed and which worked by how much, and so forth.

According to their office, they filed all the right paperwork as far back as April for my insurance to approve it. My insurance called me around June saying they approved it and they would like to schedule the delivery of Praluent. However, they had approved it for the wrong strength. Between April when the doctor originally contacted them and June, he had doubled my dose, as the 75 mg/ 2 weeks did not make a huge difference in my numbers. When the insurance called me with the approval and they found out that now I need 150 mg/ 2 weeks, they said they would need to call the doctor to have them re-issue the prescription.

Fast forward to August, and through several repeated faxes from my nurse to the insurance company, asking for the approval of the right dose, I still had not heard anything from the insurance about the new dose. I had to call myself last week and get an update from them. This is something you’ll need to get used to doing – staying on top of the insurance companies, as their main goal is to gather premiums and not pay. Or at least is how it feels most of the time.

Anywhoo, I called them. They did not call me. When I called, after about half an hour of waiting on hold, I got transferred to a first rep, who confirmed that my prescription was approved. I asked if they can just send it to my pharmacy, so I can pick it up (silly me!), and they literally laughed. They said, “Oh, no, ma’am, these are specialty drugs, so you will be able to only get them from our Specialty Pharmacy and you are locked into the mail delivery, every month”. After making sure they had everything they needed for the approval to be in order, they transferred me to a second rep. He was very patient and thorough and explained to me how everything works.

He will mail me (second day delivery through UPS) a dose for one month (two shots). Every month, I would have to call them, to ask for a refill. They will not automatically refill it. Because this is a “specialty drug” and still, I guess, considered experimental at this point, they don’t know whether the doctor would keep me on it or not. The approval of the drug only lasts for 6 months, after which I will have to again call the doctor, who will need to fax them “my case” again, to make a point for me keeping to take this drug beyond the 6 months. Then, they’ll approve it (maybe?!) for another 6 months. So, I am not only locked into mail ordering it, but also into calling them and calling my doctor and asking for the drug a lot.

The drug, he said, will come in a Styrofoam box, with ice packs in the box (Praluent needs to be stored in the fridge). They will send me an empty container for “sharps” and I will need to dispose of the injection pens in that container, and then take it, when it’s full, to a specialized center. I am thinking that my doctor’s office might know what to do with it. There will be an indicator, in the box, he said, that would show whether the temperature in the box dropped too much and the drugs are not good anymore (this did not happen, by the way – there was no indicator in the box).

Because I have had so many medical expenses this year, I have met my deductible and my drugs are free for the rest of the year. So, from now till the end of the year, Praluent will be free, the insurance will pay the whole amount. If it had not been for this, the shelf price, with no insurance, is $1400/ month. As you can imagine, quite high.

After I was done talking with the second rep, at the “Specialty Pharmacy”, he forwarded me (after another 15 minutes of waiting) to a Pharmacist. He went over several things with me, although I had told him I had no questions, as I have been taking samples from my cardiologist for a couple of months. He was very thorough, too. He gave me tips on how to make the injection hurt less (numbing the spot of the injection with ice cubes – which didn’t work, by the way, and it made the serum build up in the “frozen” spot which gave me a huge bump on my leg). He also went over several side effects. Despite what the cardiologist had told me, he said there is a potential that Praluent could affect the liver, and that I should have to have my liver enzymes checked periodically, to ensure this does not happen. He also told me that Praluent has the tendency to make you very dehydrated. This was interesting to hear, because a month or so ago I ended up in the ER because I was dehydrated, which was unusual. I drink lots of water during the day, and even at night, but somehow, I need more water than normal, lately. I chalked it up to being a “summer thing”, but I guess Praluent can have something to do with this, too.

When I got the drugs delivered to my house, they were, as the second rep said, very safely packed in a huge Styrofoam box, with ice packs inside. There was one box that contains two pens of Praluent. There was no indicator in the box that the temperature might not have been appropriate, but the box felt very cold, so I promptly placed it in the fridge and we’ll call it “good”.

After four months of forms and many-a-faxes between doctor’s office and insurance, and calls between insurance and me and the other way around, I am finally, officially, a Praluent patient.

I just wanted to take some time to outline this journey, just in case you’re getting ready to start yours with the “Specialty Pharmacy”. Hopefully, this will give you an idea of what to expect. If your insurance is not paying for the drugs, I am not sure how that would work and who would provide the drugs for you. I doubt that the doctor can just order them at the brick and mortar Pharmacy you use, but they might.

The paraphernalia arrived: opening the enormous box from the "Specialty Pharmacy", with all the accoutrements, along with the small box of Praluent (last shot).
The paraphernalia arrived: opening the enormous box from the “Specialty Pharmacy”, with all the accoutrements, along with the small box of Praluent (last shot).

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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.

2 Responses to “The Specialty Pharmacy: the Long Road of Becoming a Praluent Patient”

  1. Corinne

    OMG yes! Insurance changed the formulary and made me switch to Praluent. Took 2 months and dozens of phone calls between doctors, pharmacists, etc. To finally get delivery 2 months later.


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