I am contemplating launching a new label for some of the blogs, and I should call that new category “never give up”. As I mentioned many times before, always, and I mean always, be prepared to advocate for yourself. I can never stress this enough.
If there is just one message I can get across to those who are just now learning to navigate FH and its convoluted journey through medicine, therapies and the right specialists, is this: it will take time and patience, and more than anything, it will take effort, to learn and become knowledgeable. And when you get there, put that to good use to advocate for yourself. Never rely on anyone else, no matter how promising their commitment seems to be.
I know it may seem self-serving, egotistical and self-centered to do so, but at the end of the day, this is about you, your life, your health, your family, your support system. You don’t want to give up because of doctors who may or may not know enough about your condition, because of bureaucracy, or because of neglect from so many people involved in the process. This is your battle. It can get lonely, but you’ll learn in the process that all you have to do is know your condition, know the facts, and speak up. And I assure you that there will be people who will, eventually, listen and help.
I also need to preface this blog by reminding everyone that I do not endorse any medications over any others. The names of the medications I am referring to in my blogs are what works for me. I know many people who have the same condition (HoFH) and are using a different therapy combination. Just like there are no two bodies alike, there are no two conditions identical, nor two treatments identical.
So, please read this with this in mind. The names are given here just to exemplify my own journey. They do not endorse any of the medicines I am referring to, nor their manufacturers.
To remind you, close to a year ago (https://livingwithfh.blogspot.com/2025/07/the-end-of-era-good-bye-praluent-hello.html), in the middle of the year, with no changes to my insurance whatsoever, my insurance company decided to stop paying for my PCSK9 inhibitor injection drug (Praluent) and replaced it with Repatha, which they said, they will fully cover. I had been on Praluent since 2016 (9 years) without any issues. My cholesterol dropped by about 40% which was the biggest drop by one medication alone. I was impressed.
It was like saying “goodbye” to a friend when I had to stop the Praluent and order the new drug. I wanted to cry. Plus, as many of us who are on drugs for the long haul with a life-long condition know, you always wonder what will be the side effects with the new drug? Will I be able to tolerate it? There is always some undesired effect from a drug that you have to either make a decision you can live with or you simply cannot take it. So, I was nervous. I also am extremely incredulous of people to promise you that “two medications are identical, so you can switch to the other one easily.” I personally have not found this to be true at all. There is always a compromise you’re making.
I have tolerated Repatha well but there were some differences that I could notice, especially at the injection site. But tolerable. After three and even six months on Repatha, however, my LDL numbers were higher than my levels while on Praluent. With Praluent, my LDL dipped for the first time in my life under 70 mg/dl which was the target for LDL levels for people with increased risk. Since then, the target has moved to 55 mg/dl for people like me, with very high risk of cardiovascular disease. My levels have never been as low as all that, even with Praluent (and all the other therapies combined). But it was in the 70s range, or lower than 70, 7 times while on Praluent, while it was in the 70s only twice , and never below 70 mg/dl with Repatha.
So, after 5 months of Repatha I spoke to my cardiologist to see whether we can convince the insurance to let me switch to the Praluent again since the numbers were visibly better. He agreed. He only can request such a change. No amount of advocating to the insurance coming from me would ever convince them. They needed to hear my specialist doctor (not a PCP) reach out and explain the medical need for this. So, he contacted them in November last year with what he thought was a compelling message about switching back to Praluent.
And his request was denied. I received a letter from my insurance in the mail in November, never explaining why, but just communicating the decision. I called the doctor again in December (because like you already know about me, I don’t quit that easily) and I asked again: can we please appeal this decision. He said, sure, we’ll appeal. (Again, this request came from me, he would have stopped at the denial). And his office did appeal.
In December, I again, received a letter from the insurance saying “your appeal was denied”. I crossed my arms and pouted for a while. The letter did say I have the right to a second appeal for 6 months since the denial of this one, but I told myself I’ll try again after The Holidays.
I had a call with my nurse advocate from my insurance earlier this year and I gave her my LDL-C levels and asked her: “do you think I have a case to keep pushing for a switch? My numbers are better on Praluent, my doctor said the goal for all these drugs is to keep the LDL-C levels as low as possible, why can they not see this and just approve the switch? Repatha is obviously not that good for me. And there is an alternative that they have paid for years.” She agreed that looking at the numbers, I do have a case to push for another appeal, but that she encourages me not the appeal alone. To get the cardiologist to call (not write to) the insurance and speak with their medical advisor and explain the medical necessity for such a switch.
Since January I have been trying to email my cardiologist (several times) to make him understand that he would need to call and speak with someone or else we’ll keep getting denied. I got silence. Weeks went by, my appeal clock was ticking (I was only allowed to appeal until early June), and nothing, no answer from the doctor.
Well, as my luck would have it, his office messed up some other drugs (somewhat unrelated to the PCSK9 inhibitors) which prompted me to escalate those problems to his clinical pharmacist (since they were drug related) who is the person who actually gets the prior-authorization approvals for all my specialty drugs in the first place (and I thought he would take my requests for appeals to her, but ... maybe not?). She was not aware that I was trying to get my PCSK9 inhibitor switched. The pharmacist and I talked for a while, we looked over my levels (again) in late March and she promised she would appeal a second time and she also agreed that there is a clear case here for better therapy, so we should continue trying.
And on May 8, I got an email from her and from my insurance nurse advocate to tell me that the insurance did approve the second appeal and they are allowing me to take Praluent for another year. The prescription expires in May 2027, but at that time, we would have to go through the same process again to get it pre-authorized and approved. Next time, I will skip the cardiologist altogether and I will go directly to the pharmacist.
So, now I am back to my old trusty drug and hoping it’ll perform as well as in the past.
Of course, with all this disruption and rollercoaster drug-switchin’ my levels are still higher than they should be, but it takes up to three months for Praluent to work at its full efficiency and I have only taken one injection so far.
It took, all in all, 7 months to get this switched. Several years ago, when I was advocating to take additional therapy with a newly-approved ANGPTL3 inhibitor infusion, it took me 3 years and a change of medical systems and cardiologists to finally benefit from that therapy. But we did it! (the new doctor and me).
As they often say “time is plaque” when it comes to “bad” cholesterol and these delays and waits are one of the most burdensome roadblocks in our healthcare and well-being. But I cannot afford to give up. Not ever. Not while I know there is a solution. Time is of the utmost essence here.
I hope this entry helps, not to scare you, but to give you an example of how this battle is real but how success is also possible. Just stay informed, alert, and state your case. Always.
The best of luck in your journeys and much, much health!
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