Unfortunately, my ET diagnosis comes right at the time when I start Medicare, and I now have just a week to make my choice for the first year: traditional/original medicare with expensive extra supplements, part G (gap) and part D (drugs)? I live in the NW where there are some smaller (and perhaps more ethical??) advantage plans that could save me lots of money, but already I've scheduled an out of state video appointment at the Mayo Clinic to help me make the decision about treatment for ET. I know Original Medicare is more portable, more flexible, and will contain fewer surprise bills--but also sense I am going to have some trouble finding GPs who accept new medicare patients, and I'll have to forgo alternative treatments (like from my acupuncturist) if I go that route. It also looks to me as if I'll spend over $5000 this year on parts B, G and D, and although I will have no copays I will also have no maximum out of pocket amount. Wow, so much for making healthcare affordable for retired people!! I've been doing a lot of reading in the NYT about advantage plans and medicare fraud, and about advantage plans sometimes denying treatments and medical choices.
You who have been riding the MPN rodeo longer than I and had ups and downs of treatment expenses and trials--what did you choose and why?
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If IFN or Rux could be in your future this is a big deal. I currently pay zero for Besremi on private PPO insurance.
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How did you get an out of state remote appt at Mayo? I found before that one needs at least one real visit at most clinics to start virtual ones if allowed at all.
EPguy, Thanks for the 2025 forecast on Part D caps!
I called Mayo and they immediately (before I'd decided on them!) began to set me up to see, virtually, a doctor. I managed to get in before the end of the year when they will discontinue video exams. I'm on the west coast and did not want the expense and winter travel to MN. I've asked my local hema/oncologist to refer me, which requires a long list of records and letters, including the actual glass slides from my BM biopsy. I can see they are amazingly organized. I only hope the doc I'm seeing is not bored at me being "just" an ET patient who is being fussy about hydroxy. I'm going to write a letter outlining all my medical concerns in case they see something my local doc does not. I am counting on someone with much more experience with ET being able to gather up threads and connections not perceived by those with less experience. (How you locate just the right doc is the mystery to me. So I am trying to believe in the MAYO reputation.)
Hi, I chose original medicare, a medicare supplement (plan G), and Part D because you can go anywhere medicare is accepted which is mostly everywhere, hospitals and docs would have a hard time surviving if they did not accept original medicare. I go to Cleveland Clinic to see a specialist, the Cleve Clinic announced recently that they would not be accepting certain medicare advantage plans. I think you can switch to an advantage plan every year without underwriting but cannot switch supplement plans after your original sign up without going thru underwriting, at least this is what I have been told.
Be careful when selecting your supplement plan in case you cannot switch later. The supplement plans have different methods of calculating annual increases in premium costs, and they will increase. My first premium was about 60.00 per month and now at 73 it is around 350.00 per month and next increase is in Feb 23. I chose Aetna originally because all plan G's are the same in benefits and it was the least expensive, it is now much higher at age 73 due to the method they use to raise rates, I did not know this initially. If I had chosen AARP originally I would be saving money now. If you look at the find a plan section of the medicare.gov website it explains the different methods that companies use to raise rates. With Plan G I have never paid anything in the last 7 years except the monthly premiums and the annual deductible, now 233.00, I think.
As for the 2000.00 annual cap starting in 2025, I keep asking why this cap does not start until 2025. I have written to my Senator (Manchin) who wrote the legislation to ask why it is delayed until then (the cap on insulin starts Jan 2023). I have not received an answer thus far, I usually get a response to inquiries within about a month from someone in his office, not this time, thus far. My theory and I hope I am wrong is that the next election is in Nov 2024 and they have no real intention of letting this provision take effect. Big pharma has too much power, JMHO. It will be great for mpn patients, and everyone, if it does in fact go into effect, let's hope.
That is a shocking price jump in prices, from $60 to 350/month!! That is the sort of an increase I used to see when paying for insurance privately; it used to go up 15-25% a year quite regularly. I'd like to call this domestic terrorism and see congress tried! All those years of paying into the system and I had no idea I would be subject to the same tyrannical private profit mode upon reaching Medicare age. I will write to my reps also. They are more reasonable than Manchin, but the whole lot of them seem ineffectual when it comes to public health insurance. ( I have written many times in the past and even gotten a privately written letter back from Rep DeFazio, but still the US is at the bottom of the wealthy nations pack regarding health care expenses for its citizens.) Oregon citizens recently passed an initiative stating “It is the obligation of the state to ensure that every resident of Oregon has access to cost-effective, clinically appropriate and affordable health care as a fundamental right.” Let's see how our reps bat that around.
Sorry, but I have nothing to offer in terms of the Medicare ?/'s- but as I'm [all too rapidly] approaching that 'magic' age, I'm avidly studying/reading the responses to your questions, which also illustrates some of the great things you will encounter here on MPNVoice a lot of people, with a lot of combined experience and maybe even some common sense [occasionally 😇]. I think you'll find a lot to learn from here [as did I- even with 30+ years of overall healthcare experience.]
I'm not sure how far you are from Arizona, but i know that there's a Mayo Clinic there as well as in MN, so if you ever have to go there physically, and want to avoid having to make an arctic trek, that may be an option, but otherwise, in answer to your question about how to find an MPN Specialist, this is the place where I found mine, whom I'm very content with [she's primarily acting as a consultant, but has taken over my care while up-titrating my Besremi dosage.]:
It's a world-encompassing list of MPN specialists who have been recommended by MPN patients, and it served me well as a search tool to find my Heme/Onc MPN 'super'-specialist...
As to you being "being fussy about hydroxy", you damn well have a right to be fussy. I have written here quite a bit about my intolerance for HU, and probably posted more negative findings about it from my research into the published papers about its pluses [few and far between] and minuses [Too Many To Count]- though not literally.
In addition, I, along with Hunter and EPguy have posted quite a bit about the upsides of Besremi and Pegasys, the interferon-based medications that should actually be the standard of care vs what they have long called the "BAT" [best available therapy] of phlebotomy and aspirin, with or without HU.
If you click on any of out names and follow the thread links, you'll find plenty of information to support your "fussiness"!
As always, I'm always willing to send or post links to whatever articles or research reports might not be available to the lay-people on here because of being posted on sites limited to healthcare/medical professionals- you just have to ask.
Best,
PA
PS: Also, IDK how this MPNVoice page looks on your screen, but on mine [this is on the page where I'm replying to your original ?] at the top right side of the page, there is a section titled: "Related Posts", and although I don't always see useful stuff there, in this case, there is a post there titled "Besremi Cost and Medicare Donut Hole for Prescription Drugs", which I also found helpful.
I’ve been selling Medicare for 11 years now and when I became eligible for Medicare last year, for me it was a no brainer. I got the supplement Plan G. First of all. these plans are guaranteed issue only the first 6 months after you turn 65 or are eligible for part B. After that, you have to answer underwriting questions and you could be turned down. The other reason is that you can go to any doctor or hospital in the country that takes Original Medicare. There are many cancer hospitals that do not take Medicare Advantage plans. I always advise my clients that if they can afford a supplement plan, they should get it. I figure that if there comes a time that I can’t afford my plan, I can switch to a PPO. By the way, if you get a supplement, you need to get a separate drug plan, because it doesn’t include drug coverage.
Your experience is a great asset here for US members trying to figure this out. It seems the big take away in your info is get the desired plan no later than 6 months post 65. We can otherwise be well under the writing with our conditions.
Is the 6 months guarantee limited to certain plans only?
There are lots of changes in the next few years, do you think the 6 months opt in and plan G preference will remain?
It seems this is example of pay more get a better product, one of my fav life facts (with exceptions as always) .
For drugs, do you think the 2025 $2000 limit will apply for any drug plan? We'll all hit that on IFN, Rux etc. Is there a set of letters to reference drug plans like "F, G for supps"
All good questions. So the 6 month guaranteed issue is for any of the medigap plans. Plan F was discontinued in 2020, unless you turned 65 prior. It was replaced by a plan G the only thing you have to pay is a $233 part B annual deductible. Everything after that is covered 100%. There are other plans to choose from that are a little bit less expensive like Plan C or Plan N, but there are co-pays and other expenses here and there.
As far as the drug coverage goes, I believe it’s going to be for any drug plan. But for me, it’s a wait-and-see, because we really don’t know what’s gonna happen. The drug plans have a lot of discretion about what drugs they’re going to cover.
CJA1956, What about moving from Traditional to Advantage in future years, should my condition stabilize (rueful laugh!)? Can Med Advantage plans discriminate against cancer patients moving to Med Advantage? I think I understand Plan G will discriminate against those with cancer diagnosis moving from Med Adv to Traditional...
During the Annual Open Enrollment period, which is from October 15th to December 7, you can make that change. Medicare Advantage plans do not have underwriting and anyone can get it.
Great Question! I totally concur with the replies. I’m on traditional Medicare part F which I don’t think is offered anymore. I was diagnosed in January and I have paid 0 for anything including my BMB. I have a MPN specialist at Stanford and also a local hematologist. I think the one comparable to F now is G
There is a great series of articles called The Medicare Advantage Tradeoff Saving Money Losing Access/Med Page today Make sure to read the drs comments all support traditional Medicare I don’t understand “more ethical” From what I’ve read the Advantage plans are less ethical and here in Ca my friends all are staying on traditional plan Good sailing to you and this forum is a lifesaver
On another note I’m very stupid about putting the website on here how do you do it? EP guy? Help
I use a Windows PC, I can't advise for other ways, but at least a Mac should be similar. Mobile is likely different and there likely are other ways to do it.
In Windows I copy the internet web address of the site I want to link. This is the line at top that starts with "" It should turn all blue or some color when you click in this line. If it does not all turn color you press "ctrl a" to select all, the whole address line, after clicking in the web address line.
-Then press "ctrl c" to Copy the whole address.
-Finally click where you want it to go in your MPN voice post and press "ctrl v" for Paste.
Macs have something other than "ctrl" for these operations.
Pounds 11, Thanks for the article referral. Matches sentiment in recent New York Times articles comparing the two.
Can I ask who your Stanford doc is and how you like them? I am on the west coast and could possibly travel if necessary in the future, especially if they are knowledgeable and progressive on ET treatments.
You have already accurately assessed the situation. Traditional Medicare Plans are more portable. Medicare Advantage Plan often have significant limits on what providers you can see. You may lose existing providers if you shift to a Medicare Advantage Plan. You may find that there are no MPN Specialists available on the Medicare Advantage Plans you are looking at. You may well save money up-front with Medicare Advantage, but lose access to the specialty care that you need.
I have been fortunate to have a high quality secondary insurance from my previous employer, Fairfax County. I would not be able to access the MPN treatment I need without it. My monthly payments for Besremi are capped at $100. My Annual cap for meds is already $2,000. While the Medicare Advantage Plan would save me money and would still have the same drug coverage, I would lose access to all of the specialists I need to see. This is critical for several aspects of my care, including MPN and Neurofibromatosis/Brain tumor/neurology.
Due to the IRMAA income penalty, I actually pay more for Medicare + Secondary insurance than I did when I just had the regular pre-Medicare retiree insurance plan. Despite the fact that my insurance now coast more than ever, It is not nearly as expensive as trying to pay for my treatment any other way. I am very glad I have stuck with the Traditional Medicare + Secondary Insurance plan that I have.
Hunter, I appreciate your insights. I am shocked that I will be paying so much if I choose Traditional. I foolishly thought we really did have social medicine for elders. (Only for those of us who can foot the bill for supplements and expensive drugs, I guess.) My difficulty is not knowing in which year I will be hit with expensive treatments. (I know that is what insurance is--pay now and someday it may be valuable, but...!!) It is not at all clear to me which direction I will take medically as my diagnosis is so recent and I am reeling from it.
Hi. If you can afford the premiums, I think regular Medicare supplements are the best for the reasons given above. I’ve been able to get treatment for two different cancers covered by top cancer centers in the U.S. But I also have a good supplemental plan to cover what Medicare A & B don’t cover. You’re wise to be evaluating it & not just jumping blindly. Stem Cell transplant is something we MPNers need also to consider. I’m not near that de so I can’t say which insurance plan would be better for that. Good luck. Katie
I also chose traditional Medicare with a supplemental plan through my husbands retirement plan. After the deductible, it pays for pretty much everything. The supplemental premium is high, but it is worth it to us, I also was just diagnosed with ET In September - Hydroxyurea 500mg 1x day working great to bring all counts to normal and no side effects. I’m also in Pacific Nw - there are MPN Specialists in Seattle at UW (Fred Hutch Cancer Center).
I have traditional Medicare plan G with a medigap plan. I’m 71 and have just been told my Stem Cell Transplant is covered completely. I have not paid for any treatment other than the yearly deductable. I was diagnosed with PV in 2017 which progressed to MF in 2022. I’ve been to MD Anderson and now Kansas Medical Center. I pay $125 a month for the medigap. I would not want an advantage plan.
I feel upset for you. We have the NHS here - it is great although there are issues. I have ET and Jak 2 and take hydroxy ( 9 x 500 a week. You will need your platelets monitored and medication - have you got a GP or medic you can discuss how to manage your symptoms with.
it is easy to switch from an Advantage plan to another Advantage. However, because of medical underwriting with an ET diagnosis you would not be able to switch to a supplement from an Advantage after six months.
We have G plan and it is great. Never a question about being out of network or pre approvals. You can also go out of state. Check out local Blue Cross supplements for possible lower price and lower increases.
Second that- As I say, I'm still on [partially] employer-funded private medical insurance [I am a New York State employee, so it's the Empire Plan- administered by United Health, and by all accounts, it's supposed to be really good coverage.
That said, I just paid 2 different health systems [University of Rochester Medical Center, and Roswell Park Cancer Center], a total of $900 for lab fees, my BMB copays, and 'professional services' which were incurred just since 6/22, and I obviously still have a whole month of expenses left, which will at the very least run about $200 more- and we're nowhere near out plan's maximum out-of-pocket amount, or even having covered our deductible[s].
My message is that we ALL have to be very careful when making our choices about which health insurance plans we choose.
BTW, so far at least, Besremi has not cost me anything out of pocket- which I didn't know was going to be the case, and wouldn't have believed if someojne had told me that it would be so.
I also don't pay out of pocket, and inject at home. With certain private insurance it works out that way. But it requires a type of discount or rebate from the mfr that is part of the opaque system to get to zero. This zero cost seems less possible on Medicare.
Thanks for asking- I was pretty blown away too, because although I was prepared to pay whatever I had to, getting it gratis was a huge relief.
SWMBO is an RN, and I am a practicing physician assistant, so home injection was a no-brainer for us- especially since the cancer ctr. that is currently supervising my care is over a hour away.
We did entertain the concept of taking the 1st dose there so they could monitor me for immediate reactions, but again, we felt more than capable of coping with anything untoward that might have occurred.
BTW, I also have an epi-pen for an allergy to yellow jacket stings, so we made sure that it was nearby and even brushed up on its administration- which is never a bad idea anyway- especially because I've never used one on myself before [I have used them on patients], and they do provide a dummy one with the prescription for the purpose of practicing.
BTW, I had planned to enroll in the PharmEssentia Patient Resource [the manufacturer's program] to see if I could get assistance in paying for Besremi, but apparently Onco360, my dispensing pharmacy did that for me [in concert with my Heme/Onc's office at Roswell Park].
Yes- after about a decade of elevated Hct and Hgb treated by frequent Red Cross Blood Bank donations [they loved me for "Double Red" donations], my RBC were found to be significantly elevated on routine lab work done for my annual physical, and my PCP referred me to Heme/Onc, where they confirmed JAK2+ PV. It was only a month between the ^RBC labs and my first visit with Heme/Onc, but by then my WBC and Platelets were already/also sky high- so it seems like my previously indolent problem had suddenly become more aggressive.
It has been my experience that Big Pharma is very willing to donate or discount medications for patients at even moderately lower income levels-. At least until the patient qualifies for government-provided insurance, at which time they no longer seem to be interested in helping.
My out-laws are both in their later 80's, both have multiple health issues, which have required a lot of care and interventions, and unfortunately they are also at an income level that is literally barely marginally above the US poverty level, but because they are on Medicare, they 'make too much' to qualify for almost any assistance programs- so we often end up having to help them cover their medical and living expenses.
As a 'child-free' couple, we often wonder if there will be anyone there for us if the same situation ever develops in our elder years.
Currently, given my diagnosis, I'm not too worried about actually being around that long, although I do have some hope that Besremi will allow me to live long enough to regret being on it.
Thanks for asking- I'm feeling much better- even the side-effects that I was having that I wasn't really aware were from HU have resolved, and I'm just generally feeling well. I have not had any side-effects from Besremi, and my last CBC showed that my counts were all improving since my last dose increase to 150 mcg. I started on 50 mcg every 2 weeks because I was on HU, and that's the recommended progression. If I had it to do over, I might have stopped the HU and gone right to the 100 mcg dosage, but who knows if that might have been less tolerable.
I honestly think everyone with an MPN in whatever stage should consider at least a trial of an IFN agent- because the benefits of IFN's over the other treatment approaches are so evident and well-proven, and honestly, the quit rate because of side-effects is no higher than that of any other medication used for MPN's, and lower than several [IIRC, it averaged about 20%- some of which can be easily managed by making dosing adjustments in either amount or frequency.
If you haven't watched these presentation, you should:
That's not an easy question to answer, because the HU and then the combination of Besremi and HU did [mildly] mess up both my LFT's [liver function tests] and RFT's [renal function tests], and although the RFT's did return to normal, there have been some small fluctuations in my LFT's, since I have just been on the Besremi.
Honestly, I can't remember off-hand which results were elevated or the exact levels, but I know that they weren't anything that made me or my treatment team too awfully anxious- and that they were way less than the 3X's normal level that would require stopping or decreasing my dosage.
... and I have not [so far] experienced any of the mood or cognition changes, which were the side-effects that my MD seemed to be most worried about
I only have had video appointments with Dr Shomali at Stanford. They are very responsive when I ask questions on line. I feel like I’m hanging out alone though except for this site. As Hunter keeps saying we have to be very proactive and that’s hard for me being raised to revere drs. We have a video conversation every three months. He listens well and knows how I am resistant to putting the medication in my body. So far I’ve been lucky. Had to up the hydrea for upcoming hip surgery and it hasn’t seemed to bother me much except in my head! He works with Dr Gottlieb who is well known MPN specialist.
I have Medicare Advantage through United Healthcare. I made sure my long-time PCP and medical group accepted the insurance before signing up. I had actually signed up with one other plan, and switched when our doctors weren’t included.
When I had Stage Two melanoma last year, United Healthcare immediately sent me to the University of California at Irvine Cancer Center, under the care of a very well-respected oncology surgeon.
When I hit a speed-bump with a minor approval issue, the UHC customer service person told me to hold on, she would get it solved and approved that morning, and she did. Melanoma was no fun, but I could not have been more impressed with how quickly I was taken care of - that was one crazy high bill when it was done, and I had paid zero out of pocket when it was over.
I’ve had two not great hematologists since diagnosed with PV last year, however, I’ve been able to change specialists easily. I will say, our PCP is just the best, and I know a lot of my being happy with UHC rests with my doctor and how responsive he is to my issues. My husband sees the same cardiologist as before UHC, I see the same doctors as before.
My share of my new CPAP machine is $12 a month, I pay nothing for Urgent Care visits, X-rays, Hydroxy, phlebotomies or lab tests - other than $38 a month for non-generic thyroid medication I prefer (free if generic) and the $12 CPAP, I haven’t paid a dime out of pocket since enrolling in 2020.
As others have said, I’m really looking forward to that 2025 RX cap, as DH’s prescriptions are a lot, quickly, but for a retired couple on a fixed income, Medicare Advantage was a good choice for us.
Hi Gail, Can you tell me if UC Irvine was within your network, or did they send you outside it for the oncologist? I live in an area without big teaching hospitals, so the in/out network question is serious. I'm so glad your experience with Medicare Advantage has been good for you and your husband.
Dr. Jakowatz, my surgeon, was out of network, UC Irvine is a huge teaching hospital, about 30 minutes north of us. United Healthcare sent me to Dr. Jakowatz twice more since for follow-up exams. When my first hematologist wouldn’t answer my questions about Hydroxy and skin cancer concerns, Dr. Jakowatz helped me via messaging same day. I figured if a surgeon who teaches at University level can answer my questions about medication he didn’t prescribe same day, my first hematologist’s dopey nurse could have gotten back to me sometime that week
I’ve been reading a lot recently about how bad Medicare Advantage is, that hasn’t been my experience.
Hi there, I am a SHINE volunteer counselor (also known as SHIP counselors in some states). This program is run out of the Area Agency on Aging in each state. We are all certified, background checked and fingerprinted because we help clients new to Medicare, clients who need help paying for Medicare, clients who want to change plans, who need help paying for drugs etc. I have been doing this a long time and I too have PV. I have original Medicare and a supplement and stand alone drug plan. The problem for us is that many of the drugs (not all of the drugs) that are recommended for our condition (Jakafi, interferons) are all currently Part D drugs. They are all on the drug plan formularies and are subject to the Part D deductible and coverage gap and catastrophic phase. That means that the yearly cost runs somewhere between $11,000 and $12,000 out pocket for us unless you are lower income and can qualify for patient assistance from the manufacturers-that is very common and your doctor should be able to help you with that. I hope that the $2000 cap does happen in 2025 and that there are no restrictions or exceptions like type of drug or income. Time will tell.
The cost of those drugs would be the same if you were on an Advantage plan or a stand alone drug plan. If they ever change these drugs to Part B drugs and if you have a supplement to your Part B the drugs would be paid in full but I doubt that will happen any time soon. I feel strongly that, if you can afford it, getting a supplement and a drug plan is the best option. With original Medicare and a supplement you can go to any doctor or facility in the US that accepts Medicare. Also in most states, there is a guaranteed issue for a supplement that you only get when you are new to Medicare or if you want to change from an Advantage plan and you can pass the medical underwriting questions. If you get sick then you will not qualify for a supplement and then will have to keep your Advantage plan.
I am including the link for the Area Agency on Aging in Washington State if that is where you live-if not you can google Area Agency on Aging in your state and then call them to ask them for help making your Medicare decision if you feel like you still need help.
Thanks, Bluetoday1, for that rundown. I am in Oregon, which is not one of the best states to be in for Medicare reasons, but not one of the worst, as far as I can tell from what others here have shared with me. I will probably do Traditional, although traveling for treatment in the future would be expensive and intimidating for me. Nonetheless, it sounds like that is where a new medicare applicant should start if she or he has a "history" like an MPN diagnosis, darn our system of penalties for ill health!
I have a question that you may be able to answer, though. If on Traditional I choose a part D drugs plan that gives me trouble (other than the trouble you say almost ALL medicare patients face with the top tier cancer drugs) can I change yearly from company to company for part D without an underwriting process? Is that much assured or will I be painted into a corner?
Yes you can change your drug plan every year during Medicare Open Enrollment -Oct 15 to December 10 with an effective date the following January. You should check your drug plan every year because the premium pricing and the drug pricing and coverages can change from year to year. Here is a link for AAA in your area :carefororegon.org/list10_or... a link for Oregon AAA to find a counselor.
Someone commented on supplement pricing-you should definitely do as they suggested-you can shop the plans to see who has the lowest price but you should also ask for a premium increase history. Previous increases are not a guarantee of what it will look like going forward but it does give you an idea of what it might be. Go with larger companies-they collect more premiums so can spread out the risk to everyone. Remember it is only 20% of the total Medicare approved bill.
Hi again, in 8 years I have changed my part D drug plan about 5 times, so far no underwriting and it was done online by simply clicking on the enroll button and they do the rest, such as cancelling the old plan and enrolling in the new plan. If you have a my medicare account they keep track of your plans and you can see them by logging in anytime. Good luck.
The healthcare situation in the US is far too complicated. When I retired 7 years ago and moved to State College PA, I decided to go on a Medicare Advantage plan offered by Geisinger, a century-old highly regarded Kaiser-style medical system covering (mostly rural) north-central PA. I've been very happy with the plan; the local Geisinger doctors range from acceptable to excellent. The good thing is that the plan covers care at several research hospitals, including Johns Hopkins and the University of PA. I see a local hematologist but also consult a MPN specialist at the University of Pennsylvania. As with so many other things, the devil is in the details. I'm also looking forward (with some trepidation) to the drug cost caps.
Been there, done that and doing it again because Medicare is starting to change in 2023. Highly recommend talking with a medicare insurance specialist who is familiar with multiple company plans in your geographic area and can speak to this topic in detail as cja1956 noted in his response. I can give you some info based on my current situation today. Please forgive the lengthy post but wanted to give you some real life examples of things you are likely now or soon to be dealing with and how I have dealt with them under medicare. It is NOT like private insurance I had before retiring. First, plans are based on your residence location. What insurance company I use and costs involved are based on the midwest (Michigan) and are not the same as in the NW. Medicare contracts with insurance companies to provide pre-defined services and pre-negotiated costs for a lot of hospital and doctor costs. There's a yearly deductible and then medicare may pay 80% of the contract price for that service. You are liable for the deductible and the 20% not covered by medicare. Plans may cover these costs for you and that's the plan C, D G ,etc. differences in coverage and cost to check out. For some plans, the patient may be liable for a co-pay of the cost--medicare pays and you pay. If a service is not liable for co-pay, neither can the provider charge you for the difference between the service cost and the medicare plan payment. My plan scope includes drugs in the Medicare covered formulary but does not dictate drug cost. I check each prescription to GoodRX and SingleCare just in case they have a bigger discount. Hopefully medicare will soon negotiate down drug costs. In three years, I have run into only one test used by an eye doctor that is not in scope. I have to pay $45 for this test 2/year. In three years I have run into two drugs not covered but the plan allows for an appeal to try to get it covered. One was rejected and one was added to scope but with mini savings so we use GoodRX or SingleCare for these two for greater cost savings. My plan is a PPO at $0 premium per month but I pay $29 per month for more inclusive dental coverage so $348 per year in dental premiums. Remember, too, that there is a monthly medicare cost for part A 'major medical' that is deducted from your social security or you pay monthly to the government--$178 I believe. So I am actually paying $526 per month for health coverage just for me. That's $200 over FAMILY coverage premium under private insurance we had before retiring. Also note, talk with an accountant re tax implication. Out of pocket for medical costs may be deductible depending on your total income. I believe premiums are not considered an out of pocket medical expense? Life changed when ET Jak2 came along in April. My out of pocket cost went up significantly because of co-pays for doctor visits ($45), ER visits ($90) and some services (examples cardio CTScan $325, abdominal MRI $125 ). My plan includes prescription drugs. I usually have a co-pay though usually small for every prescription. I take anagrelide 1 mg 2/day. A 90-day supply cost is $978 but my plan covers $939 of it so my out of pocket is $39. Add in co-pay for prescriptions for Vitamin D, folic acid, blood thinner, blood pressure, low-dose aspirin and levothyroxen examples--Since April my out of pocket cost YTD is $3,223 in co-pays for these prescriptions, hospital out patient visits, doctor visits, 3 days in hospital, one ER visit, multiple cardio tests including CTscans, MRI and heart catheter, one iron infusion, one gastro endoscopy, and weekly blood draws for CMP and DIFF tests. The hospital out patient test co-pays for CTscan, MRI and endoscopy are half of my out of pocket cost this year. Have not costed out what I would do if on significantly higher cost drugs or treatment plan for ET would cost. Please talk to a medicare insurance specialist, one not biased to any particular company or plan. Check each of your doctors, hospitals, and key drugs by name to see what the various plans be it PPO, HMO, Plan G, etc. are included and at what cost to you. Our advisor created a spreadsheet of plans that showed coverage important to us and everything laid out with cost for each by plan. Make an informed decision based on your needs. Best of luck with your ET adventure.
OK, a question about Medicare choice and chemo drugs for ET and MPNs! My Medicare advisor/broker put it to me like this: If your chemo drug is bought at a pharmacy and taken at home (like HU?), the advantage plans are better because their drug plans are superior to Traditional Part D plans. If one should get the choice to take an injectible (Interferon? Pegasys? Besremi? ones I have not been offered yet!), are those drugs considered pharmacy drugs or in office treatments? If "in doctor's office" then Traditional is the way to go. I know there are multiple other comparisons between the choices, but I'm trying to focus on the drug issue right now. Broker says you can switch plans mid year if your treatment shifts and you can see you are not in the best spot. Has anyone done that?
I also pay nothing out of pocket for Besremi. That said, since my husband retired and I'm on his health care, I'll be forced on to Medicare in March of next year. My husband is a retired teacher so our healthcare is with Calpers so I'll have to select a plan they offer with the best prescription plan available. I've already been told that commercial health plans are better then any Medicare plus/advantage plan.
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UPDATE FOR MPN PATIENTS IN ENGLAND RE:- Fast access to COVID medicines for people with blood cancer
Nursing with ET during concerning times. 
