The drug in this story is Evkeeza, a drug used for HoFH patients in addition to other cholesterol-lowering therapies and which requires prior authorization from the insurance company before your doctor’s lab can administer it to you. This is an infusion drug, which involves you going to the infusion center and getting an infusion the strength of which is calculated based on your weight for an hour every month.
So, what happens to the prior authorization approved by the insurance company for the doctor that originally prescribed the drug when you switch doctors?!
To make a really long story short, the answer to this question is: the prior authorization given to your previous doctor is null and void. Your new doctor has to apply for a new one with the same insurance (if the doctor agrees to prescribe it to you), since the doctor’s office is responsible for providing the treatment (not just prescribing the drug).
To make a really long story even longer: after waiting for two and a half years with the first doctor to even understand what this drug is, get it prescribed and approved, and waiting for the first doctor’s pharmacy to understand what the drug is and how to order it, you now have to wait even longer for the new doctor to apply for the same prior authorization (hope they don’t make a mistake on the request form), and hope that you get approved the second time.
So, now your two and a half years are more like three ...
Evkeeza has been approved since February 2021. I asked my first doctor in the summer-fall of that year if he thinks he can get me approved for it. He said he had never heard of it and will research it. It took him till the fall of 2023 (that is two whole years if you’re not counting) to actually prescribe it to me. After his office figured out what the drug is for and how to fill out the paperwork for the prior authorization, I got approved for treatment (for 6 months) in February 2024. Since then, I have been waiting on the first doctor’s pharmacy to figure out where to purchase this from. And this puts us in May 2024. Again, if you’re not counting, two months (soon to be three) have passed from my 6 month-approval, so even if I got the infusion tomorrow, I would only be eligible to get 4 infusions, not 6 which is what I was approved for.
I called the maker of the drug (Regeneron) and asked if they could help get the drug to the first doctor’s pharmacy. They responded with “Why, yes, yes we can, but we need to know your doctor’s information.” I sent that to them in March 2024. Since then, I have had no communication from the manufacturer, the doctor, or the pharmacy that I can start my treatment.
Finally, this month (May 2024) I am moving to a new doctor who has heard of the drug, has gotten it into their infusion center and is even treating two patients with it. Score, on my end. Except ... the previous prior authorization does not work for the new doctor.
His office applied for it last week and now we wait for the insurance to re-approve it (although the patient, my coverage and my medical condition and cholesterol levels have not changed) yet again (hopefully).
Since this is a new doctor and they don’t have my whole history of diagnoses, treatments tried before and current therapies, I sent the new doctor the following:
My cholesterol levels with and without any therapy
My current cholesterol levels (my current LDL is 250 mg/dl - far from my target of 70 mg/dl)
My surgical report from the open-heart surgeries from 8 years ago (that documents the massive coronary artery disease already present in my arteries)
My genetic test results (testifying that I have HoFH)
The prior authorization approval from my insurance for the previous doctor
I spoke with the new doctor’s team and they said they feel confident that the approval will be granted but that it might take about a month (from what they saw before) to receive it.
I also spoke with a nurse with whom I am connected from the insurance company and she said although she is not in charge of the decision, because she knows my history, she also feels like this is just a formality and that it will be approved. She also can check on the status of the application, so this is a good resource to have in your corner, if your insurance offers it.
And thus, bureaucracy wins. Healthcare takes a step back.
In the meantime, I wait - not too patiently, I’ll have to say. And also, more than anything: I hope that once all this is said and done and I do get the treatment, finally, the treatment actually works ...
Here’s hoping indeed!
