Hoping to hear from one of you on Medicare this is an aberration, but I got a letter today indicating that the Medicare appeal submitted by my local cancer clinic (regarding expensive Besremi ropeginterferon treatments that started in January of this year) has been dismissed. The letter says Medicare does not cover the item/service. My initial extensive Medicare research prepared me for the sorry fate of owing thousands of dollars for a year's worth of Besemi, as my Medicare B and Supplemental plans G and D together would not quite cover the bill. But a few thousand dollars is quite different from hundreds of thousands! Each injection here (in good old USA🤢) is about $20,000. I've called the clinic a few times to say I'm afraid to continue treatment without understanding my share of the cost, but the clinic says they will handle the negotiations. Can I trust their business office to handle the Reconsideration Request Form? All I know is that ropeg was the most logical treatment for my PV, and that it has brought down an astronomical platelet count to almost normal, and hematocrit to normal range in 6 treatments.
If I need to back off the treatment while my financial fate is decided, how fast are my blood counts likely to rise? Experience, anyone? I will of course ask my doctor, too. I am awaiting a call back from the clinic that appealed Medicare's initial "NO." I guess companies sometimes subsidize patients, but I can't see anything like that happening fast.
All my (many!) supplementary tests are indicating that my heart and valves and arteries (cholesterol of 124, etc) are in excellent shape for even a younger person, so I'm hoping a pause will not deliver a punishing clot. I know it is not that simple an issue, but massive bills have a negative health consequence as well. (Sorry for this obvious point!)
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Ovidess
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Hunter has detailed experience on Medicare that we US members can all benefit from.
On the durability, the old message we're all different. But at least in my case, I held ok numbers for 3 months, as in this post. I was on Bes for 11 months. Might have continued but I'm now on Rux. My guess is if one has stable CHR on Bes, and if allele was reduced, it's more likely to work out. I think some of the PEG studies pointed this way, but 2 years on therapy was more typical.
There have been posts on multi dosing with IFN. In Euro they are allowed 2X per syringe for Bes, similar to some insulin procedures. It's not approved in the US this way but clearly uses the med more efficiently if one is not on the max dosings.
The answer to your question is complex. It depends heavily on the Medicare Part D plan in which you are enrolled. They vary quite widely. The formularies vary quite widely. The copays vary quite widely. The underlying plan rules vary quite widely.
I ran into a similar problem with my Medicare Part D plan, which is the part of Medicare that would cover Besremi. This was about a month after Besremi received FDA approval and before it was on the formulary on my plan. The Cigna plan said no on the first request. They said no after the doc appealed, They said the plan would "never cover this drug based on Plan Rule 2470" That was the WRONG answer to give me. I set about filing my own appeal, which I have had to do before. The first step was to call and require a copy of the Plan Rules being cited. I called the Pharmacy Benefit Manager, Express Scripts. They could not find the plan rules. I called Cigna. They could not find the plan rules. I kept calling. And calling. And calling. Total of 14 hours of phone calls. I NEVER gave up. Along the way, I filed a Medicare Grievance based on the denial citing a plan rule they could not/would not provide to me.
In my last phone call, I contacted a more senior agent at Cigna. I explained the whole story, again. She reviewed my history and stated that Cigna had mishandled the appeal in the first place. It had gone for an Administrative Review when it should have gone for a Medical Services review. No one had told me that it had not received a Medical Services Review until this point. This makes a BIG difference. They sent me another appeal form for my doctor to submit.
I sent my doc the new appeal form and he went to call it in. Later he called me up laughing at the same time I started getting texts from Cigna. He told me Cigna told him not to bother with the appeal because they already approved the Besremi. He said "whatever you did worked." It was the Medicare Grievance that overcame the approval barrier. It appears that it forced Cigna/Express Scripts to confront the fact that there made an error. I had also made it clear I was not going to give up and just go away.
I put my first order in a few days later. I paid my $100/month copay. The non-formulary med was paid for for the rest of the year. There is no copay at all after I reach my $2000 annual medication cap. In 2023 Besremi was put on the formulary at a Tier 4. Still hoops to jump through, but the doc got it approved on the first appeal.
Insurance rules for expensive medications are quite arcane. Pharmacy Benefit Management companies are designed to save insurance companies money, not to benefit the patient by facilitating access to costly medications whenever they need them. This is not an indictment of private insurance companies. The same cost-driven decision making is found in Medicare, Medicaid and public health systems all over the world. Cost always drives access to healthcare in all systems everywhere. This is a reality all patients must learn to manage in whatever healthcare system they are in.
Assertive patients receive higher quality care. Passive patients do not. Educated patients know how to gain access to the care they need. An empowered patient can gain better access to care in all healthcare systems.
Navigating healthcare systems can be very difficult. It is not something everyone has the time, energy, or inclination to do. Advocating for individual healthcare is a very specific skill set. Note that the "Patient Navigators" that work for insurance companies, hospitals, or medical practices can be helpful; however, these "Navigators" work for different parts of the healthcare system, not for the patient. You can choose to hire your own Patient Advocate who works directly for you. This is not covered by insurance or Medicare. You pay out of your own pocket. This assures that the Patient Advocate has the sole focus on representing you.
If you are interested in seeking assistance from a patient advocate, here are two organizations that can link you to someone.
If you are willing to learn and put the time and energy into the appeal process, you can successfully file your own appeal. You need to learn the Plan Rules that drive decision making for your insurance plan. They may be posted on-line or you may need to call and ask for them. They go by different names (e.g., Plan Guidelines). You may have to be persistent to get them. You will also need learn how to file a third party appeal, where your appeal is taken outside of the insurance plan for an objective review. You may need to contact the Office of the Insurance Commissioner for your State. Note - insurance companies do not like getting calls from the Insurance Commissioner.
You can also reach out to Pharma Essentia. They have a Patient Assistance program that may be able to help. besremi.com/pharmaessentia-... Note that the Pharma Essentia Case Managers work for the company that makes Besremi. They really WANT you to access Bsremi.
There is a good book you can read that may help. You Bet Your Life! The 10 Mistakes Every Patient Makes. It is a little dated, written in 2013, but it does an excellent job of explaining how healthcare works. amazon.com/gp/product/09828...
Never give up. As Winston Churchill said "Never surrender." It is a good mantra to adopt.
I hope that helps. Please do let us know the outcome of your appeal process.
Thanks, Hunter, I'm going to copy out your answer and work away at the process. I don't quite get the rejection process: if Medicare itself rejects the drug, then the Part D providers don't have to pay ANY share of it? Makes no sense from this patient's point of view.
EPGuy, I think you were addressing the other part of my sprawling question: what happens if I go off Besremi while solving this financial mess. I was planning on keeping on for two years, following the guidance of those studies indicating that extra blast of Besremi after reaching blood count goals helps cement the "improvements". We'll see.... On top of the $$$ worry, the interferons have their physical downsides, for sure. For me.
Agree on the the downsides. My husband was not a fan of IFN because I was droopy too often, esp on our important camping trip routine. But at a dose of ~75 I think I would have done well and maybe avoided the adverse end.
Hmmm. I'm on 300 mcg now. I become a sleepy amoeba almost every afternoon, and just do what I absolutely must do. Maybe some day I can be on a low dose then? And live up to my human potential again, not to mention giving my family a break from my litany of complaints.
In our recent replies your blood responses are looking good. If that continues, you should ask Dr about a reduction at some point if possible as I noted. I regret not pushing harder on that.
Understand right here on the family, even as I usually tried to keep in under wraps he can see it and it brought both of us down. Cope with Hope.(that your bloods get right and all that follows)
It is not Medicare that has rejected Besremi. Medicare accepts Besremi as a potentially covered drug. My Besremi is being covered by a Medicare Part D plan. Here it is straight from Medicare.
There are certain kinds of drugs that are excluded from Medicare coverage by law. Medicare does not cover:
Drugs used to treat anorexia, weight loss, or weight gain
Note: Part D may cover drugs used to treat physical wasting caused by AIDS, cancer, or other diseases
Fertility drugs
Drugs used for cosmetic purposes or hair growth
Note: Drugs used for the treatment of psoriasis, acne, rosacea, or vitiligo are not considered cosmetic drugs and may be covered under Part D
Drugs that are only for the relief of cold or cough symptoms
Drugs used to treat erectile dysfunction
Prescription vitamins and minerals (except prenatal vitamins and fluoride preparations)
Medicare Part D plans are not managed directly by Medicare.
Part D is provided only through private insurance companies that have contracts with the federal government—it is never provided directly by the government (unlike Original Medicare).
The Besremi denial you received did not come from Medicare. It can from a private insurance company where you purchased your Part D plan. Every plan has different formularies and different rules. Medicare only denies the excluded drugs listed above.
Hunter, I'm still not clear on the Medicare denial. (You Europeans can ignore this boring post, sorry!) The letter of denial was from an agency that does NOT use the name of my drug plan D (AARP/United Healthcare) and the address includes the words: Part B MAC Jurisdiction F. It says the company (Noridian Healthcare Solutions) was "contracted by Medicare to review" my doctor's appeal. I have traditional Medicare, not an Advantage Plan. After seeing my doctor I understand more about the denial (they don't like that I'm not administering the drug myself yet) but not WHICH agency does not like it. The fact that they say it should not be administered by the cancer clinic makes me think Part B of the traditional Medicare is involved in the denial--more of an issue of service than drugs? I will learn more in May, when I next go to the clinic.
I have heard of people trying to access Besremi through Medicare Part B administered at a doctors office like an infusion therapy would be. I was not aware anyone had ever actually done this. Besremi is intended to be self-injected by the patient, much like insulin. It is so simple and painless that there is no medical reason for it to be injected by a medical professional. Your assessment makes sense in that context. It sounds like the claims processing company may have caught something that Medicare Part B is not intended to cover. The claim for Besremi should be processed through the Medicare Part D part of your insurance package. Whatever your copay and caps are on this plan would apply. Some plans have a straight percentage of cost, which for Besremi would be prohibitive. Other plans, like mine, have a set maximum copay, $100/month on my plan.
It is very important to understand how your insurance coverage works. It is up to the patient to manage their own coverage, accessing the appropriate channels for obtaining medication and other treatments. You may be able to find out more about the Noridian part of your plan here. med.noridianmedicare.com/we...
Accessing Besremi through the Medicare Part D plan managed by UHC/AARP will be its own different process. If Besremi is on the formulary, it will be a high-tier drug that will require prior authorization. If it is non-formulary, then it will require going though the process of non-formulary drug approval. You will need to understand the plan rules that drive the authorization process for your specific plan. Check your Medicare Part D company website for information. If you can't find it, check this site. medicare.uhc.com/aarp
For medicare, is Cigna your supplemental insurer? I recall you had high quality pre-medicare coverage; did that quality/privilege transfer to the medicare system?
I think we can select any supplemental insurer with medicare, is that right? I've assumed I would select them specifically for their attitude on Bes or Rux, or any other miracle that comes out by next year. Is this a plausible approach?
It seems for any hiccup in the process we need to be sure it goes to the "Medical Services review" path. Or might that be a unique Cigna process?
I have traditional Medicare parts A & B, and a supplemental coverage plan as a Fairfax County retiree that is managed by Cigna. The Medicare Part D plan that I have is part of this supplemental plan. I used to have the retiree Cigna full coverage plan prior to being required to start on Medicare to be allowed to keep my retiree coverage. The County does provide partial support for my insurance coverage as part of my benefits package which makes it worth keeping the County coverage.
Going on Medicare had several negative impacts. The formulary on the Medicare Part D plan is not as good as what I had access to as an and employee/retiree not on Medicare. Despite this, my current coverage is still much better than what many people have access to on their plans. Going on Medicare also makes my insurance package significantly more expensive than just being on the insurance I had before. While there is a reduction in the Cigna insurance rate, there is a punitive fee (IRMAA) built into the cost of Medicare for people in the upper middle class. While my insurance package now costs several thousand dollars more than it did before, it is still worth keeping. It not as expensive as Besremi would be out-of-pocket.
You are correct that you can choose any Medicare supplemental provider you are eligible for. You are also correct that all of the plans have different formularies and different access to the more expensive drugs, Researching how these plans actually work is time consuming and complicated. Bear in mind that the information readily available is advertising designed to get people to buy the insurance. Just because a plan says that a medication could be approved does not mean that it would be approved.
Understanding how the approval and appeals process works is essential to assessing medications. Regardless of whether it is a private insurer or a public healthcare system, the approval systems is designed to contain costs. It is essential to understand how to navigate the process when seeking approval for an expensive medication like Besremi or Jakafi. It may be possible to get approval, but the process may be difficult to navigate in any system. This is an excellent description of how these systems work. Note that while this article speaks specifically to Cigna, this kind of system is common with insurance companies and public healthcare systems. propublica.org/article/cign...
The structure and rules vary between plans and systems. The commonalities are the presence of a logarithm that is used to determine approvals. There are Plan Rules or Guidelines that determine approval. Unless the request goes to a Peer-to-Peer or similar review, no doctor from the insurer/system may ever actually see the request. The logarithms are designed to automatically say NO to expensive medications unless a certain sequence of answers are entered. Understanding how this decision making logarithm works is essential.
Another commonality is the difference between an "Administrative" and "Medical" review. They may be called different things, but the process is the same. The difference in these two types of reviews is exactly what it sounds like it is.
When an insurance company/healthcare system doctor gets directly involved in the approval as opposed to the automated system, actual medical necessity can be more a matter of individual judgement. Bear in mind that the doctor works for the insurance company/healthcare system. The doctor's job is to save the system money. That does not mean that the doctor is evil-incarnate nor that medical judgement is suspended. It just means that this doctor works for the company/system, not for the patient. The case has to be made for medical necessity and the clear superiority of the requested medication over less expensive options.
That was a very long answer to short questions. The issues are complex. That, unfortunately, is the nature of accessing healthcare.
Wishing you all the best as you enter the world of Medicare.
Great answer- [and no longer than was required], saved for my upcoming [forced[] transition to Medicare.
I was also going to point out the PharmaEssentia patient access program- they paid my $30 per injection co-pay for all of 2022, but for some reason, I was dropped out, and I'm waiting for word that it has been re-instated. I had to download and complete the application form, and submit it to my oncology office to complete their part- this time. Last year, I was covered without ever having filed an application, so IDK what happened- ? beginner's luck?
Another thing that can be helpful is to consult a "Health Insurance" broker.
When I was out of work for a family illness/surgery [my former employer was structured so that they could be exempt from the FMLA], the broker we consulted was a life-saver, or at the very least- a game-changer. ...and he works for the insuree, not the insurers- although he is paid a same pittance by them for every insurance form/enrollment he submits, he gets it from all and any of them regardless which one, so he is not affected by payment bias.
To summarize- Thanks again Hunter, and good luck and God bless Ovidess- keep us informed on how things work out for you- we'ree all pulling for you!
I had no problem getting Medicare to cover mine when I turned 65 last month. Our Medicare supplemental plan is with CalPERS (husband is retired teacher) so I can't tell you what a similar plan is in the open market. We have Blue Shield Medicare PPO.
I am sorry for your dilemma. Here in Austria, my Besremi costs €6000 per month for 300mcg.( 150 and 150). I could not pay that either if the insurance refused it and it’s 1/3 of your $20,000! As usual, the US has astronomical health costs!!! I don’t know how the insurance companies and Medicare stay afloat. I grew up in the states and all I remember is medical lawsuits left and right. Many doctors also charge exorbitant prices because of their malpractice insurance.
as far as I know regarding Besremi, if you’ve been taking it for a longer time, it should continue working for a while. It’s not like other drugs that stop working immediately after you stop taking them.
Take deep breaths throughout the day and try not to let this affect you emotionally. Yes, our emotions have a direct effect on our body. It is a fact, and there should be no fear of stating that. Stay objective, and have some trust in the clinic where you’re at.
Your note of 150/150, does that mean you're taking two doses of 150 each from a 300mcg syringe? This would be the multi-dosing that is not officially authorized in the US.
On the working for a while, I did experience that in my forced "experiment" post. Rux cannot do this.
If I were self injecting that is what I'd want to do, to avoid that terrible waste of a prohibitively expensive drug. (Yes, I know there is a risk of infections, and the company must know that too.) I hope the manufacturer is doing a google search right now to see what customers are saying, to wit: DO NOT PACKAGE Besremi in unrealistically big doses. Most of us use half or less than 500 mcg. A terrible waste of your product and patient/government/insurance money. Paying for two needles and two separate vials of drug makes much more sense. Better yet, sell it in 150 mcg doses.
I had been doing that, it is safe as evidenced by the Euro practice. Fore those on lower doses it uses very little medicine.
The contents have inherent preservatives, even as they say "no preservatives" I've posted in detail on this area. But there are some basic procedures to keep everything clean.
But multi-dosing is still not approved by US and can't be officially recommended.
Just back from clinic: It turns out some of the Medicare issue is the fact that they are still injecting in the clinic, due to ever-changing dosage. Doctor says he is communicating with Medicare about this. My platelets and HCT are doing very well, but now my liver counts are way up, so we've cancelled this week's injection anyway. (Not that I think one week will give time for the wheels of medicare to turn decisively.) I appreciate the break from the shot, though I am sad to have the liver unhappy. (I did have pains on the right side this week, drats.)
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