I am very pleased to report success in getting Besremi authorized by my Cigna Medicare Rx - Medicare Part D plan. The original denial contained the statement "There are no conditions under which this request would be approved under Medicare part D." It took about 6 hours of repeated phone calls to various Cigna Departments but persistence overcame resistance.
For those is a similar circumstance, there are two things that seem to have worked to get past the initial denial and first level appeal denial.
1. I filed a formal Medicare Grievance due to Cigna not providing a copy of the Plan Rules on which the denial was based and denying access to Besremi.
2. I kept calling back to the Cigna Appeals division seeking the information needed to file an appeal. In my last call, the customer service representative identified that Cigna had made a mistake. They originally referred the appeal to an Administrative Review when this should have been a Medical Coverage Review. This should have been handled as a Formulary Coverage Review requesting authorization for a medication not on the formulary.
Cigna faxed a new appeal form to the doctor who prescribed the Besremi. When he contacted Cigna they told him it had already been approved. The doc called me to tell me and said the approval was not the result of anything they had done. Cigna contacted me moments later to notify me of the authorization.
The next step is for Biologics to contact me to arrange shipping. I have three doses of Pegasys left, which I will use up before starting the Besremi. I am planning to follow Dr. Mesa's recommendation for the starting dose for someone stable on 45mcg/week of Pegasys - 63mcg/every-other-week of Besremi. We will see how that goes. As it turns out the switch from Pegasys to Besremi was not researched so it really is going to be trial-and-error. I am fine with being a "Beta-tester" for doing the switch. It is the only way we will learn.
To all those who encounter denials of Besremi or any other medication needed to treat their MPN or other condition - do not give up! We may not always succeed due to persistence, but we will always fail when we do not persist. We must be our own best advocates.
All the best to all of you and continued success in accessing the care we all need and deserve.
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hunter5582
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Great news hunter5582 !!! Good luck and God bless you ! I’m waiting to begin it very soon myself, it’s been approved for me as well I have United Healthcare. My doctor appointment is 1/11. Hopefully I will get it soon after that . I’m praying it helps me because I’m on three hydrox. a day and my platelets are still 1.2 million.
That's amazing news, Hunter. Well done indeed. I take my hat off to you. Also deep gratitude that you are paving the way for us. I am about to embark on a comparable effort to get my surgery brought forward before the hip deteriorates so badly that the chances of success recede into the distance My platelets are nearly down to normal (525) on Peg 45 mcg every 2 weeks and mobility is declining rapidly.
Anyway, back on the subject of this thread, once I have (hopefully) recovered from said surgery, I will definitely turn my attention to the possibility of beta-testing over here (UK). So will be following your feedback with considerable interest.
You mention "formal Medicare Grievance". I'm not yet on medicare but for others that might need to do this procedure is there a specific web site or form that you used for this?
In another tread I discussed the dosing for Bes, below. What are your thoughts on the dosing rise? It seems to apply for both HU naive and HU. (maybe the PEG transition can skip this stage since you're already stable on PEG?)
<<The recommended BESREMi starting dosage for patients not on hydroxyurea is 100 mcg by subcutaneous injection every two weeks....Increase the dose by 50 mcg every two weeks (up to a maximum of 500 mcg), until the hematological parameters are stabilized (hematocrit less than 45%, platelets less than 400 × 109/L, and leukocytes less than 10 × 109/L).>>
<<So the dose is increased until there is a response. But I'm not sure I would want to be dosed that way with an agent that is inherently slow acting. It's like flooring the gas pedal to get up to speed; before you can check the speedo you're going 90MPH. 90 leads to cops (adverse event). I'd rather push gently to give time to check my speed. The transition from HU might be a good compromise in which the starting dose is 50mcg, but still has that aggressive increase. >>
The Medicare Grievance is an internal process for Medicare Part D plans at Cigna. It is different than an Appeal. I expect that all Medicare plans have something like this. I expect it dovetails with requirements from Medicare, but is a process internal to Cigna. The big deal for anyone on Medicare (or any other insurance) is to ensure that you understand the rules that drive decision making for your plan. You cannot advocate for yourself if you do not understand the rules. That and have a lot of persistence.
The MPN Specialist was planning to start me on 50mcg/every two weeks. I decided to start at 63mcg based on the Pegasys-Besremi conversion formula recommended by Dr. Mesa in his presentation. I plan to stay at this dose long enough to see how I am actually reacting. Since I am stable at 45mcg/week of PEG this may be all I will ever need. time will tell.
I agree about not being in such a hurry to get to an immediate response for most people, but not all. Some people do need a more rapid response, particularly with HCT for folks with PV. Since I am stable, there is no need to be in a hurry about anything.
I expect to learn soon on my insurance. They seemed inclined to cover it as long as they see a good reason to use it.
On HCT, maybe if one needs urgent HCT control INF is not the fastest way and PLB or HU might be a good short term solution to enable the lower INF dosing. My thought is to keep INF low as possible to max the odds of tolerating it. But this is all new and I for sure don't know much here.
In my case I'm good on HU for what it can do so it will be interesting how the blood numbers evolve if/when I start Bes.
I would expect that if you titrate off HU while initiating Besremi you can keep your levels stable without the dose going too high. With certain exceptions for true immediate critical needs, I prefer looking at MPN care as a marathon rather than a sprint. Sometimes less truly is more. The MPN Specialist I see prefers the approach of using the minimal amount of a drug needed to achieve a treatment goal. This is the approach I prefer as well.
Hope you are able to access Besremi. I know you are aware to the potential benefit of improving the odds that the MPN will not progress. Time will tell just how real this benefit is.
Well done! Just shows dogged determination pays off! Can I ask a question as I am not very knowledgeable about besremi at all but if I recall correctly you were doing very well on peg which I am on too. What are the benefits of besremi v peg?
At this point I expect that these two very similar forms of interferon will have similar efficacy. The biggest difference is in the monopegylated formulation used by Besremi. This is thought to result in greater tolerance/fewer side effects. Should my dose ever need to go higher, I would prefer a medication that should be easier to tolerate. Assuming that Besremi is easier to tolerate, then I may be better off regarding the long-term use I will need.
While I am fine using a medication that is off-label when there is evidence to support it, I do prefer to use a FDA-approved medication. I also think those of us who are willing can help push things along by being willing to be beta-testers for the PEG-BES conversion. This was not researched and is not included in the formal dosing recommendations from PharaEssentia. The only way the MPN care System will find out how to handle this is when there is enough experience to generate guidelines.
That is my rationale. We each need to make decisions that work for us. And have access to the medication.
Thanks for that insight. Awaiting my next results in a few weeks and hoping peg will have brought them down. I chickened out at the last minute of adding hydroxy into my meds at the last consultation. Not sure on how besremi fairs as an option in uk but will certainly keep it up my sleeve as an option to ask my haemo about at next consultation. Thanks to yourself and this site our knowledge widens. Good luck with the switch over and let us know how you get on
To add a bit also: The makers of Bes claim their formula allows better control of INF levels in the body via a slower and especially more predicable release. Each iteration of INF, esp the pegylated versions, has tended to less frequent dosing and more constant INF levels in the body. Bes doubles or quadruples the dosing interval. It's also possible that Bes will work well for more years than PEG as a result of its smoother active levels.
But nothing is that simple since many members here take PEG also as ~twice per month. If makers of Bes are right, these patients are still seeing larger variations of active medicine.
Oversimplifying it's sort of like time release Tylenol (Paracetamol) that gives you a smoother pain relief experience.
If you don’t mind me asking, why the switch from pegasys to besremi, I thought you were doing well on peg from previous posts. Maybe I’ve just missed some of your recent posts.
On the whole I do like Cigna. I prefer the old plan I had prior to being required to be on Medicare (better drug formulary and less expensive) but I am learning to make this plan work.
Congratulations, Hunter. That's great news. I believe so strongly that we have to advocate for ourselves and am always glad when doing so delivers the desired result. I was also wondering why you decided to make the switch from pegasys since it was going so well. I'm having success with pegasys, so am very interested in your decision making process here. Thanks for being a beta for all of us! Kim
CONGRATULATIONS ! Your hard work and determination has paid off, not only for you but for countless others. Please document your journey when you start Bes.
Heartfelt congratulations Hunter!! - what an amazing person you are after all you’ve been through. A shining example of determination against all odds. All the best with the switch
Hunter - that is great news! And you are absolutely right - we have to persist....I had an initial fight (supported by my MPN specialist) switching from HU to Peg for ET but stayed the course and got it approved. Interestingly Besremi is already fully approved for PV here locally so will keep my eye out for any additional info for ET.
Congrats great news Hunter ! I am dealing with Cigna Now Part D for Droxia since they changed it from a Tier 3 to Tier 4 drug. The Dr office called to try to get it back to Tier 3 they said no and they are going to appeal on my behalf.
On my plan(s) the main difference in a Tier 3 vs Tier 4 drug is the co-pay required. Prior authorization is pretty much the same process. You will not be able to get the formulary changed but you should still be able to access it as a Tier 4 drug - might have to pay more though. If you are running into a problem with Prior Authorization then you ay need a copy of the Plan Rules - Clinical Criteria. Given that you are seeking Droxia rather than hydroxyurea generic I am assuming you need the lower dose (<500mg). This should be a no-brainer since the generic form only comes in 500mg.
Hunter yes correct I use the 200mg thus need droxia and yes it will cost me more under the Tier 4 vs a flat co-pay as Tier 3 . My MPN specialist is trying to see if they can appeal but I think the chances are slim, the odd part is most other companies have it as a Tier 3 and in 2021 it was a Tier 3 will keep trying
Hate to say it but I expect you will have to just pay more. I doubt this is something that will respond to an appeal since you will be still able to access the medication. That does not mean that it is not worth trying. It is important to let insurance companies know when they screw up the formulary. Nothing ever changes when people silently accept things. Good luck with the appeal.
Hi Hunter I hope you have fully recovered with Covid and your mom is getting better as well. I hope your case was not as severe and your mom never tested positive And yes I am still doing all the paperwork for the appeal but it’s a tough battle.
One question for you has your Doctors advised you for the fourth booster shot yet ? being in the USA those who are immune compromised can technically get one. I checked with my MPN doctor back in the end of December when I had an appointment with her and she said wait and see from the data from Israel and what the cdc state. All my shots were Phizer and the last one was end of august so it’s been 5 months now and I wonder if it’s starting to ween off. Also I asked my doctor if there is a test to take to see how many antibodies one does have she said no however I do read in the posts that many in Europe do have some sort of test ? Thanks
It took 12 days to be free of symptoms but I was finally able to shake off the COVID. My Mom never developed and COVID symptoms which is odd given how severely ill she is otherwise. As the doc-in-a-box said "this is a strange disease." We are making arrangements to get her into a small 3 bed facility with hospice care in place,
I have not asked about the 4th COVID vaccine. I expect I am now loaded with antibodies between having has COVID and the monoclonal antibody treatment. I have not bothered with the antibody testing as my docs tolds me those tests are not really worth doing. I would not change anything I am doing based on the results, so I tend to agree.
Good luck with your appeal. Hope you get it worked out.
Hunter glad to hear you are well and your mom never experienced COVID and sounds like plans are being taken care of for her. Yes you must have tons of antibodies now and sounds like you were able to get the right treatment. Thanks for your insight and have a great weekend
Congratulations on a job well done. You achieved your goal and should be commended. Hopefully you will be a ground breaker for all those who need this medication. Keep us informed of how you do on Besremi. Do you know how much it will cost you yet? I think the list cost is 180k per year. Best to you going forward.
Besremi retail cost is about $180,000/year. Once I meet my annual deductible ($250) it costs me $100/month. When I meet my annual out-of-pocket cap ($2000) the insurance covers 100%.
That is a good deal with that particular drug plan. Is that an Advantage plan or just a drug plan? I did not know that any Medicare plan had an out of pocket drug cost cap. Here in FL the only out of pocket caps are for medical care and do not include the cost of drugs.
This is an employer-sponsored Medicare supplemental plan managed by Cigna. It is not a Medicare Advantage Plan. I refused to sign up for that since it would have limited access to specialists and none of my specialists are on the panel. The drug plan would have been the same though.
I get frustrated with the Medicare Part D plan I am on now since the formulary is inferior to what I had before I had to go on Medicare. It is also more expensive to be on Medicare than not due to the IRMAA penalty. However, this plan is still much better than what many people are able to access. I know I am fortunate if still at times frustrated.
No matter what plan/system you are on, you have to be willing and able to advocate for yourself. You have to understand the rules that drive your access to care and know how to navigate the system in which you find yourself.
Thanks for letting me know that it is employer sponsored-big difference. I volunteer for SHIP and help people with their Medicare every day. You are correct that costs often go up when you go from employer insurance to Medicare. You have a very good deal.
For me to go on Jakafi it is 11k for the year and, like you, I am not low income so there is no assistance for me. I have original Medicare and a supplement and drug plan so I can go anywhere to anyone I want to for care but I pay dearly for it.
Fantastic news - shows that self advocacy is so important.
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