Insurance denied Besremi: I just got the denial... - MPN Voice

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Insurance denied Besremi

Wewo01 profile image
8 Replies

I just got the denial letter from my insurance that they will not cover Besremi. I will have to take their covered formulary drug, Pegasys, and I guess do miserably before they will approve. It’s a disappointment…sigh…

Bummed!

Kim

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Wewo01 profile image
Wewo01
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8 Replies
hunter5582 profile image
hunter5582

The denial is not necessarily the end of the issue. You have a right to appeal the decision in every plan I have ever seen. It is important to understand how the process works on your policy. A key part of the process is to understand your plan rules. You can request these if they are not published on the insurance company website.

It is common for an initial appeal to be done by your provider. This may or many not work. A higher level appeal can also be filed. This needs to be done in writing following the process required by you insurance company. This can usually be done by either the patient or the provider. I have had better luck filing these appeals myself. I have done this twice, once for Ubrlevy and once for Besremi. Both appeals were successful.

I posted previously about my Besremi approval saga. You will find that here.

healthunlocked.com/mpnvoice...

You may also find that your insurance company is just behind the times on updating their formulary. The people processing your request may not even know that Besremi is now one of only two FDA approved meds for PV. HU and PEG are noth off-label for PV. Sometimes that does make a difference in the appeal process.

Suggest you not just give up. We must often be our own best advocates. It takes skill, determiation and commitment to be an advocate. Wishing you success in doing so.

Wewo01 profile image
Wewo01 in reply tohunter5582

Thanks so much!!! I appreciate your response and I will definitely dig in!

monarch5000 profile image
monarch5000

That denial might be a blessing in disguise because some (not all) former Pegasys users who switched to Besremi have found Besremi is much harder for them to tolerate and doesn't control blood counts any better. So now they want to get back on Pegasys.

Wewo01 profile image
Wewo01 in reply tomonarch5000

Hi Monarch,I appreciate your response. I have never tried Pegasys. I just remember my MPN specialist saying that the side effects were less with Besremi, although I know everyone is different in their disease and drug response.

I’ve been having phlebotomies since January, about every 3rd week and was on HU. I stopped HU in mid March. I am one who cannot tolerate it. HU never got my HCT below 45, nor did it lower my white cell count. The phlebotomies have really helped and my HCT is staying between 38 and 41.8. Whatever I end up taking, I hope it lowers my WBC as well. It consistently runs between 13,500 to 18,000.

Meatloaf9 profile image
Meatloaf9

Sorry that your request has been denied - so far. It is strange that your drug company would approve a drug, pegasys, that is not FDA approved for PV ve Besremi which is approved. Must be a cost factor. From what I have read here and elsewhere the Pegasys will probably work well. Seems most people tolerate it just fine. It may cost you significantly less depending upon your insurance.Maybe your plan is just not up to date as Hunter has mentioned.

It seems to me from reading posts that if you have a MPN specialist at a large teaching hospital or medical center that treats a lot of MPN patients that their pharmacy and pharmacists may have more experience in communicating with your drug plan and have a better chance of getting you approved without a long appeal process.

Best to you in getting Besremi approved. I think I would be pretty happy if I could get either Pegasys or Besremi approved, Please keep us informed.

Wewo01 profile image
Wewo01 in reply toMeatloaf9

Hi Meatloaf9I guess I just had my sites set for Besremi. I guess I could try Pegasys. 🤷🏻‍♀️

Thanks for your input!

monarch5000 profile image
monarch5000 in reply toWewo01

I read through your prior posts and saw that you have had some heart issues. Well that may be another reason to steer clear of Besremi, at least initially, because even though I don't have heart issues, Besremi caused mine to beat hard upon even minor exertion whereas Pegasys never did.

I'm not a doctor, but I think Pegasys would be good for you because 1) It usually quickly lowers WBC, and Platelets. And after 3 months or so LDH starts going down too and eventually normalizes. Pegasys sometimes takes 1-3 years to lower RBC/HGB/HCT, however, so you could need some phlebotomies for quite a while longer. Do you feel better or worse with the HCT at 38-41 vs 42-45? If you feel better at 42-45 then I'd consider cutting back on the phlebotomies once you start Pegasys. The long term goal of Pegasys treatment is to become phlebotomy free or nearly so and that way iron levels return to normal and then most people feel better. I also have PV and Pegasys has been a wonder drug for me in getting rid of my symptoms, normalizing blood counts (but took 3 years to do so) and making me feel disease free again - all with minimal side effects.

Wyebird profile image
Wyebird

Disappointing for you. I know there might be a huge cost difference but if not any chance you could cover the cost difference?

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