I recently received a letter from my Medicare part D drug coverage provider that basically said they were no longer covering my Pegasys a in 2025 and said the reason was that it was not approved by the FDA to cover my diagnosis of ET. I have asked my Doctor to assist in the 60 day appeal process to see if they would make an exception under the continuity of care argument. Not sure, but I find this a bit suspicious on the heels of the change our govt made that caps patients our of pocket medical expenses at $2000/ year. Wondering if this is how insurance companies are going to fight back, just find reasons to cancel coverage of the more expensive drugs, or are they just being more diligent and by the book with their approvals. Anyone else right this hurdle and what was your outcome? Thank you
Pegasys now denied after 2 years of coverage - MPN Voice
Pegasys now denied after 2 years of coverage
I had the same experience about a month ago. I never heard the details, but my MPN specialist and her team were able to work through the approval process over the next couple weeks. I was able to get my first shipment and I'm hoping that the second will not be held up. Good luck to you!
Sorry to hear about the denial of care. Unfortunately, this is a fundamental part of how Pharmacy Benefit Managers contain costs. They count on people giving up when confronted with a wrongful denial to maximize profits. Fortunately, there is something we can do about n inappropriate denial of care.
The first step is for your prescriber to file an appeal. This should trigger a peer-to-peer review in most systems. It is important that this review should be a Medical Services Review rather than an Administrative Review. Your provider's billing team likely understands this but it does not hurt to be sure.
The Medicare Part D PBM will likely push to get the prescriber to use hydroxyurea since it is so much cheaper than Pegasys. It is important to note that hydroxyurea is also off-label for ET and the other MPNs. It does not have FDA approval for any MPN. The PBM will ignore this due to the cost difference.
Hopefully, your prescriber will succeed on your behalf. If not, do not give up. That is not the end of the process. You have the right to file your own appeal. In fact, a patient-filed appeal can succeed where a preciber-filed appeal fails. An additional fact is that a patient-filed appeal carries more legal weight (relating to contract law). I have twice needed to file my own appeal for meds my doctors could not get approved, including Besremi.
Filing your own appeal requires research and persistence. You will need to find out the specifics of your Plan Rules for your policy. Specifically, the rules for approvaL of an off-label medication that is on the formulary. Fortunately, the case you need to make for this will involve what is in the research and practice guidelines for treating MPNs. The good news is that Pegasys is one of the preferred medications for ET/PV in the NCCN guidelines. nccn.org/patients/guideline... This should be quoted in any appeal.
The process is more complex than just this part. If you need to file your own appeal, do your research. There is usually more than one way to file an appeal. The appeal needs to be based on how your Plan Rules are structured. Be aware that when you call the Part D insurance company, the "Patient Navigator" you are speaking to works for the insurance company, not for you. While they are not there to represent your best interests, they can be very helpful. You have to ask the right questions, be polite, persistent and assertive. Be ready to spend time and energy. I spent a total of 14 hours mounting my appeal for Besremi which I won.
It is an option to hire a profession patient advocate to help you with the appeal process. If you wish to pursue this option, look for someone who is a Board Certified Patient Advocate. Here are some links should you ne interested.
app.umbrahealthadvocacy.com...
As Winston Churchill said "Never Surrender!"
Wishing you success moving forward.
As always Hunter, thank you so much for your detailed insights. You act as our own forum certified patient advocate as you are not only experienced in many aspects of mpns, but also take the time to share with others. I'll let you know how this ends up, with top hat, cane, and cigar in hand!
So just a quick update on my Pegasys denial. After my first appeal was denied, my Hemotologist at Mayo sent them an enormous packet with many studies done all over the world showing the positive effects of interferon treatment with regards to Mpns. They approved my prescription for another year!
HiI ve just asked health unlocked to put a highlight on each post denoting country of origin
Posts from the US re drugs can be misleading even concerning for some patients, especially those newly diagnosed
I tend not to read posts from the US for that reason
The healthcare system in the states is very different to that in the UK.
Hi, actually I do like to have this kind information even though is from US or any other country since we suppose to share our experiences with the medications and other situations with all different countries and around the globe. So please do not STOP allowing for all members to be able to post and share their information with us all, regardless what country is coming from.
I agree, if you read my reply again properly, I asked Health Unlocked to ONLY HIGHLIGHT the country of origin on the post, where the writer of the post is located.I m not asking them to DELETE all posts from countries other than the UK!!
I found out recently that the $2000 cap only applies to med that are approved by your insurance company. If you pay out of pocket for a drug that is not approved by your insurance company... it does not count towards the $2000.
Medicare part D max out of pocket change for 2025 -how it affects costly mpn drugs
Pegasys injections now hurt
PV on Pegasys, now with high liver studies
Change of Pegasys Dose
Outcome after 4 years of weekly Pegasys injections for PV.
