Denied, and Then Approved. Again

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

If you have followed this blog regularly, you know that I have had trouble in the past being approved for my PCSK9 drug, Praluent. There is a whole process you have to follow to be approved for this drug by your insurance company, way long after a specialist doctor decides that it is your last resort.

I have outlined this struggle and the positive outcome from my last encounter with denial to be approved for the drug in this entry, earlier this year:

If you read that entry, you’ll see that this insurance liaison helped me get my appeal approved, after having been rejected a few times. That man asked me to reach out to him directly should I ever encounter any problems with my approval again. I knew that offer was not going to be left hanging and that I will need his help again, and so I did just recently. But I am jumping ahead of myself!

So, after being approved for Praluent, finally, in the beginning of this year, I had to again obtain a pre-authorization from my insurance for my specialty pharmacy to be able to process my prescription renewal this August (after 6 months). It works like this: the insurance faxes a form to my doctor, and as the insurance representative and the pharmacy manager assured me last time, all they need to see is that my cholesterol level stays low on this drug, to ensure that the drug is still working. So, all they are asking the doctor on the form is what my LDL is, and what it was before starting therapy. Now, I would think that if the cholesterol level is not low, the doctor would not even prescribe the medication, right?! Why would they put me through a treatment that is costly (for anyone), risky (as we are yet to know the full spectrum of long-term side effects of this drug), if the drug is not working for me?! But I know: I ask silly questions!

So, this August, I get a letter from my specialty pharmacy telling me that my pre-authorization has been denied to renew my Praluent prescription, because my doctor has failed to send documentation that shows that there is a reduction in the LDL level while taking this drug – I paraphrased, but that was the gist of it. I was confused, because my LDL level before Praluent was 260, and my last level was 160. So I know my doctor has these levels and his office would have provided them, if needed.

I reached out to the same liaison from my insurance that helped me before, and the whole misunderstanding (again) was cleared up in less than half of a day. It turned out that all that the insurance company received from my doctor with their original request was the “fax form” (I imagine it to be like the fax cover letter with my general information on it), and not my medical records. When he intervened and they requested the information again, they received 26 pages of medical records. After reading those, they approved the pre-authorization for Praluent on the spot. When they received just the “fax form”, they turned around and denied me, without so much as to pause and ask themselves “hmm … maybe there was a fax line interruption and the rest of the pages are missing and we might need to call the doctor and make sure there is nothing else coming”, or something. Anything. I spoke about the broken processes in the medical world in another entry (, but they abound, in my opinion, at every level.

This time, the insurance also approved me for a whole new year, instead of the original 6 months. Again, if you have read in the past: so far, I have been on Praluent for 18 months (give or take a couple of months when the drug was denied and I didn’t take it), and I needed a pre-authorization from my insurance every 6 months in order for the specialty pharmacy to fill the prescription. After 18 months, the renewal is now required just every year.

I will have to say, it was helpful to have this relationship and be saved an appeal, or several. I still believe that there are still a lot of rusty links in our processes. Maybe these medications are still very new, maybe the drug processing folks are still too little trained, what have you: if you are on any of these drugs, or any drugs where documentation from the doctor to verify your condition is still needed with every refill, be vigilant and act fast to stand up for your cause. I have made this connection with the insurance person through the Family Heart Foundation who has introduced me to him as they knew about my difficulty to obtain an approval. Your employer (if you have your insurance through them) should have an advocate for your insurance that you can connect with for such cases. I will continue to do my share to push for more changes, more efficiencies to ensure they finally get the message and that filling such drugs gets to be routine for them, but sometimes, it might take a whole village.

The good moral of this story, however, is this: that the insurance companies and the specialty pharmacies, albeit marred in bureaucracies and lack of patient understanding at times, are willing to listen and learn. Or at least some of them are.

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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.

One Response to “Denied, and Then Approved. Again”

  1. Mike Lynch

    As a 64-year-old Australian man living with Heterozygous familial hypercholesterolemia (HeFH), I find it interesting to read of your struggles to access your PCSK9 inhibitor. After a similar struggle in Australia, we were able to get Amgen’s PCSK9 drug Repatha on the government subsidised Pharmaceutical Benefits Board in November 2018.
    The benefits of this drug have been pretty dramatic for me. Without any drugs, my Total Serum Cholesterol was 510 mg/dl. Using the statin drug Lipitor 80mg my levels drop to 290 mg/dl. Then with the combination drug Atozet (ezetimibe and atorvastatin) my levels dropped further to 212 mg/dl. Now with the addition of the PCSK9 inhibitor Repatha (evolocumab) my levels are at a staggering 58 mg/dl.
    The numbers are not the whole story. Careful control of your body’s inflammation levels through diet and exercise are what really stops the progression of heart disease. It’s now 16 years since my quadruple bypass surgery and my bypass grafts are patent i.e. exactly as they were in 2003. I’m happy to share information I achieved this result if anyone is interested.


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