I’m currently actively actively waitlisted for a transplant, I’ll turn 69 years old early next August. I’m still working full time with good health insurance through my employer.vo plan to purchase a supplemental insurance policy to cover what medicare does not cover when I retire. Finally, my transplant center guesstimates that it will be approximately 1.5 years before I’ll receive a deceased donor kidney.
I have some spoken with the financial coordinator at the transplant center about health insurance issues as well as a possible retirement prior to receiving the transplant. So, I know what they say to patients. However, I hear different things from patients. Thus I’d appreciate your thoughts about my question:
I have heard that good commercial health insurance is preferred over Medicare to cover transplants. Is this just another rumor or is there some factual basis to suggest that commercial medical insurance is preferred?
Thanks,
Jayhawker
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Jayhawker
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Like you, I have good insurance through my employer. Even so, I was instructed to sign up for Medicare as secondary insurance because Medicare has generous benefits to cover transplants, particularly the medicines which some insurance plans might not cover.
I am in the process of applying for Medicare as we speak. The way it works, as I understand it, is that for the first 30 months post-transplant, I will retain my primary insurance, and Medicare will serve as secondary insurance. Following that, Medicare will become primary for 6 months, at which point my employer insurance will again become primary.
I was advised by the insurance specialist who I worked with at the transplant center that I should sign up for Medicare at the time of transplant for the following reasons.
First, when I become eligible for Medicare in the future (either due to disability or age), Medicare Part B will cover my immunosuppressive drugs at 80% ONLY if I had at least Medicare Part A at the time of the transplant or enroll in Medicare at the time of transplant. Enrolling in Medicare at the time of the transplant allows me to backdate the effective (active) date to the first of the month I received my transplant.
Second, there is no cost for Medication Part A (if you have sufficient work credits). The Medicare part B premium for 2021 is roughly $149 per month. If I have decided not to enroll in Part B at the time of my transplant but only in roll and Part A, I have to make sure that I enroll in part B before medicare switches to primary at the 30-month coordination of benefits period. If I want to enroll in part B at a later date, I'll have to wait for a special enrollment period, which is Jan-Mar each year. If I enroll during that time, Medicare Part B will not take effect until the following July 1.
Third, I have one year from the date of my transplant to sign up for medicare part B. If if I don't sign up that 1st year, I will not have coverage under Medicare Part B for my immunosuppressive drugs in the future.
Fourth, if I become eligible again for medicare at a later date, my immunosuppressive drugs will be billed under Part D instead of Part A. This usually results in higher part D co-pays and premiums.
Finally, Since I received a kidney from a living donor, which I did only due to the generosity if an altruistic donor who stepped up out of the blue, if my donor has medical issues related to the transplant that show up at a later date, my primary insurance will not cover their medical costs. By contrast, medicare will cover those expenses.
Sorry for the long-winded answer, but I have been copying verbatim from what I was provided by my transplant center insurance coordinator. My advice is to get in contact with the insurance coordinator at your transplant center to fully understand your options and the implications of your choice. While it is good to check with your financial planner, they likely will not have the level of knowledge required to understand the financial implications of opting to sign up (or notbm sign up) for Medicare.
You can also find more info at Medicare.gov and by talking to your local SSA office.
Could you help me understand better the following "Medicare Part B will cover my immunosuppressive drugs at 80% ONLY if I had at least Medicare Part A at the time of the transplant or enroll in Medicare at the time of transplant. "Do you mean you need to sign up for different Medicare to get 100% drug coverage?
I did talk with the financial coordinator at my transplant center about medication coverage when I retire and am on Medicare only. My question was whether a Medigap or supplemental health insurance policy would cover he 20% of my medications that Medicare doesn’t cover and if so which medigap option should I choose?
She indicated that there were Medigap policies that will cover this. I’ll also check about dialysis as when the graph eventually fails I’ll then need dialysis…
Anyway, I’ll work with her in this as I move to retir Kent. When I do go onto Medicare Part ab as a retiree I’ll need to sing up for the Medigap policy at the same time to assure approval for coverage at the same premium as a healthy retiree…
Given my age this later issue is donething ive got to keep in mind as well.
Jayhawker, thank you for posing the question so well. I have struggled with the same question and--after signing up for Medicare A, B, D, and a United Healthcare Supplemental Gap policy--that some transplant recipients DO instead opt for Medicare C Advantage Plans. On a month-to-month basis, the Advantage Plans appear to be less expensive, and, in my financial situation and fearful of inflation, I have wondered if I should shift from my Supplemental policy to an Advantage Plan.
I am so confused though. I am nowhere near eligible age and have full benefits from employment so I never thought I qualified. I just asked the Medicare associate on chat and they said I have to be receiving SSD to qualify but I don't intend to stop working. What am I missing here?
ILMA 54's discussion regarding the wisdom of sighing up for Medicare--even if you do not have to rely on it--appears "on point." Now that I am 65 and am on Medicare, I am glad that the social worker at my transplant hospital convinced me to enroll in Medicare A while I was still in the hospital. (My understanding at the time is that when I signed up on or around July 22, 2005, the start date of the Medicare A policy was July 1 of that year. I never used Medicare A years ago when I was in my late 40s because I was working and, thus, my employer policy was always seen as the main policy.
I’m definitely still working full time. I was told I had to have Medicare Part A before the transplant in addition to my employer health insurance. So, I enrolled in Medicare Part A (no expense with that) last Feb. Of course I was 67 at the time so was already Medicare eligible. I’m not sure if that made a difference in my situation or not though.
There is a new financial counselor at my transplant center now though. She’s not terribly good at explaining stuff like this. That’s why I thought I’d reach out in this forum to get some basic information regarding where I can go to find this information myself. I need to be sure I’m understanding this. It’s likely I’ll be fully retired before my donor kidney arrives. That will change my insurance situation significantly.
This is great information; very thorough! I was required to sign up for Medicare Part A as part of the transplant eligibility requirements once I was approved for the transplant. So, I signed up for Part A last Feb. but following your post I have a MUCH better idea why that was so critical!
I wish that someone had explained this to me as clearly as you have three years ago. I just celebrated my 3 year transplant anniversary. I chose to use my employer sponsored health plan and did not apply for Medicare. It appears that my choice will have some serious financial impacts with immunosuppressant drug coverage when I become eligible for Medicare due to age. Thank you for taking the time to explain the process.
I am glad it was useful. I was fortunate in that before I checked out of the hospital following my transplant, my post-transplant coordinator walked me through the options and risks associated with the various choices.
Could you help me understand why you may have some financial impacts with immunosuppressant drug coverage by not electing Medicare in addition to employer insurance?
Well, I am not certain how the statement “Medicare Part B will cover my immunosuppressive drugs at 80% ONLY if I had at least Medicare Part A at the time of the transplant or enroll in Medicare at the time of transplant” may impact my financial obligations for medications once I become eligible for Medicare either through age or disability. So, does this potentially mean that Medicare part B will cover less than 80%?
I don’t know the answer and would really like to learn more. That is what I meant by my comment. Hope that helps.
I went through this very scenario this year. I was over 65 but still used my wife's insurance since it was very good. She quit working also, so we lost her coverage. Therefore I signed up for Medicare part B. I did sign up for Part A upon turning 65, which one should do to avoid penalties later.
Anyway, I had been researching for some time to see if Medicare would pay for name brand Prograf. I was somewhat concerned about some of the generics since there were bad reports about some of them - discussion for another time. No one could answer that question for me. I was told that if you go with a Medicare Advantage plan with Part D drug coverage, then you have to use what is on their formulary(drug list) and that only contains generics. I picked a Medicare Advantage plan that has Part D drug coverage!
After much research, I ended up going with Sandoz tacrolimus. The pharmacy was out of it on one order so I had them fill it with named brand. Low and behold, it was covered by Medicare Part B at 80%. Even with the discount it was still 4X the price of generics. However I did qualify because I did apply for Medicare before and during my transplant and had the transplant in an approved Medicare hospital.
I do have to shop around for Sandoz each order because pharmacies will fill the order with whatever they have at the time and that might not be Sandoz. Also, if I change generics I need to get blood work done for three weeks to make sure my tacro levels are the same.
So far the Sandoz is working fine and I found a pharmacy to work with me. I don't think you will have to worry when you get on Medicare. You will have many other options through Part D if you are locked out of Part B immunosuppressant coverage.
Prograf name brand 1 mg is $1.312 per pill. through Medicare Part B with the 80% discount.
I take 3 a day so that's 118.10/month and $354.31 for a 3 month supply.
That was through CVS, but most of the pharmacies were the same. I don't know if something like GoodRx would help or not since that is already discounted.
Generic is 0.249/pill so about $0.25/pill
For my dose that means $22.48/month and $67.44 for a 3 month supply.
So name brand is 5.25 times more expensive. My math was wrong when I said only 4 times.
When I was on my wife's insurance, the insurance covered everything except a copay of $150 and that was for a 3 month supply of Prograf. Astellas offered a rebate program that would rebate the $150 if I had a company insurance plan, (no Medicare). So I paid nothing. The insurance company also went to generic unless your doctor would request for name brand only. My doctor gave me that exemption so I stayed on name brand until we lost that plan. I think that was Blue Cross. I have Aetna Medicare Advantage with Part D now.
You did a beautiful job of explaining that information. I have talked with good people who are working as unbiased Medicare consultants, and I have found that they are not all well acquainted with the Medicare as it relates to renal patients.
Thank you for bringing up this topic. Responses have been great even as they are a little overwhelming. I received my transplant at the age of 70. My wait was 5 years. I was working full time when I was put on the list so over that time I went from medicare secondary to medicare primary. Eventually I purchased a medicare supplement when I went to part time. Now at 72 I am not working due to the challenges of being exposed to covid even though I have received 3 shots. When I had my transplant I was under medicare and my work insurance. The next day I was under medicare and a supplement. The only problem I had during the process occured with my work insurance. Private insurance often put up road blocks so they don't have to pay even though they are paying a lower fee due to medicare pricing. However it all worked out and presently my financial status is fairly stable with very little medical expenses to come out of pocket. Medicare is a God send. I often wonder if I had had medicare earlier in life I would have had to have a transplant. When I was younger and working I often did not go to a doctor because the co pay was so high. Now under medicare I do not hesitate. In the long run I am doing ok so I hope others can filter through the paper work and find the best course of action. Take care.
Hi Jayhawker. My husband is an insurance agent who sold Medicare plans and has recently undergone a transplant. He has 1) traditional Medicare A&B, 2) Medicare Plan D for pharmacy, and a 3) Medicare Supplement Plan. Since the transplant was completed with several intermediate hospitalizations, he has paid zero out-of-pocket hospital expenses and about $1K in pharmacy costs. His Medicare Supplement Plan picks up most of the overages here and there, including some medications. The premium for the Medicare Supplement and Medicare Plan D is about $500/mo combined.
You can also go with another route and select Medicare A&B and an alternative Medicare Advantage Plan (which generally includes pharmacy). Those may or may not have a premium and they operate like traditional group insurance where out-of-network expenses are either reimbursed on a substantial reduced or not at all depending on the plan. The networks are largely regional.
The risk with Medicare is that the doctor must accept the Medicare reimbursement schedule - not all do. So some doctors may not want to treat you. On the other hand, Medical Advantage plans impose you must go to a provider in network. The advantage of the Medical Supplement is that it's national in scope, the Medical Advantage are regional. He suggests you talk to a licensed Medicare licensed agent to get a full picture of what is available to you for coverages.
I'd like to add that it would be wise to check with your HR Benefits folks since you're on staff with a major university. I, too, worked for a large school system. You'll probably have access to your institution's group plan. If so, many educational institutions give you the opportunity to enroll in Medicare (primary) and then they have a group plan which acts as a supplement for retirees. If your university does this, then that likely is best option cost wise. This was my choice, with my hubby guiding me. So, my self employed hubby has Medicare A&B, Medicare Plan D for pharmacy, and a Medicare Supplement (United) Plan for backup needs. Whereas I have Medicare A&B, and my school's group plan (Innovation Health). My particular group plan includes pharmacy benefits. Hubby would have preferred being on my school's group plan as it's a very good one but the cost to add him in was exorbitant. By the way, my hubby's transplant center informed him that Medicare lifted the year based restrictions for transplant medication coverages for people like him this year. You may also want to ask your center about this as well. Hope this helps you a little bit in figuring out what to do.
Unfortunately yes it does, unless the private insurance does not have immunosuppressive benefits then Medicare will kick in. You still have to go through the hassles of the Medicare application process. I just received my kidney three months ago and I have Medicare as my primary and employer group insurance as my secondary. My medical costs have been very minimal so far. I also haven’t had a hassle with the coordination so far. I’ve had it for the last three years and feel fortunate compared to what others have to pay and their experiences dealing with Medicare.
I would love to go to that link but every time I click on a link I never can get back to the same posts. Can you send just the txt vers of the link so I can type it in on another tablet and read it. I know it would be easier to click on the link but I just can’t seem to get back here. 🙃. Thank you.
Hi I’m not sure how to give you the text version on my phone because it keeps converting it as a hyperlink so I spaced after the // w’ and after the . before the org so hopefully it breaks the link and you can copy and paste it? Hope that helps.
w w w.kidney. org/atoz/content/faq-expanded-medicare-coverage-immunosuppressive-drugs-kidney-transplant-recipients
Maybe with your husband's expertise you can give me some insight into my situation.
I am having sleepless nights for the following reason: At the time of her June 2020 kidney transplant, she only had Part A in place. Her Part B coverage started on July 1, 2020.....just a few weeks difference. Because my employer's group medical plan was primary and provided great coverage there were no consequences. It paid well for the surgery and has covered the drugs very well also.
But I retire on December 31 and will lose coverage for my wife and myself under that plan. Wed both need alternate arrangements going forward as of January 1, 2022.
My wife intends to stay on her former employer's retiree Medicare Advantage (Part C). It seems to be a good plan with a low premium, good coverage and a $3,000 maximum out of pocket limit. I suppose it helps underwrite the plan, just as many employers do for their current employees.
I am anxious to see how this Medicare Advantage plan will react in January 2022 when we seek our first refills at the pharmacy. I am crossing my fingers that it will cover them no questions asked. But as a Medicare Advantage (Part C) plan, is there a risk they will deny coverage because she was not enrolled in Part B at the time of her transplant? If she had no Medicare Advantage plan or Medigap coverage and was relying solely on Original Medicare, would there be a risk that Medicare would deny coverage for the same reason?
Thanks for your time in considering my convoluted situation.
Hi! Hubby said your wife will probably do just fine. Insurance companies, including Medicare, can't penalize a person for pre-existing conditions, it's against the law. So she is enrolled right now Medicare Parts A and B and that coverage is in effect now. He says your wife should, however, make sure her company's plan includes pharmacy. This is very important. Most do. He said he doesn't know enough about her group plan to provide advice. Your wife should check directly with the insurance company that carries her company's policy to see if this benefit (pharmacy) continues upon retirement. The insurance company will know because they must coordinate claims with Medicare. (In very big companies, an insurance rep may actually have an office in the company's HR department.) Also, one can go to Medicare as Medicare supervises all plans. Hope this helps. I sense you'll soon have your answers.
Many thanks to everyone for sharing your excellent information! It all sounds consistent with my experience earlier this year. I was on dialysis and then received a transplant last month. One additional tidbit of information I'll add is that I used a broker to help me select my best options for which Medicare companies to use for Medicare B, Gap, Drugs, and Dental/ vision/ hearing. There are a number of good people out there, and I used Boomerbenefits.com, who does not charge a fee, and walked me through everything. Their representatives are knowledgeable, accessible, patient and pleasant to work with. They also got on three-way calls with me, and assisted me with signing up for each policy. I checked behind them and they were spot-on with their recommendations, finding the best combination of benefits and premiums. (It shouldn't be this complicated, but it is. )
Do you have any advice on how to find a good broker for personal insurance and the eventually a licensed Medicare broker. See I have one year left on my 36 month when Medicare is cut off. I will only be 62. I can’t work and doubt I qualify for any assistance with a c a cause my parents passed and left enough inheritance to throw me over any assistance. What they left I invested and can’t touch for 7 years. I don’t have my own quarters to get disability. (I was a home maker for 30 years and also took care of my parents till they passed). I had no idea about quarters. I went thru a lawyer that assured me I could apply under my husbands benefits and wasted a lot of my time only to inform me they were not aware I could not get that unless my husband was deceased. My husband has severe copd and on oxygen. He still does paperwork for his business but is not able to actively work. But makes enough for us to live right now. We almost lost our business and claimed many loses for years. His parents died and we have lived manly off a trust from his parents. That is coming to an end and our son has run the physical part of the business and pulled it up but is not what he wants to continue doing. So he will be leaving. We have not done this well since my husband was able to get out and physically work and see to the business himself. I don’t feel that anyone can step in and I am scared for the business when my son leaves and we don’t have the trust backup. Sorry to ramble. Thanks for any advice.
The Medicare broker I used and had a very good experience with, see my earlier post from months ago, is Boomerbenefits.com. For other insurance brokerage, I do not have experience but have heard friends speak highly of aarp. If you are ESRD then that should be your qualifying condition for Medicare, and you would not need to be 65. The social worker at your dialysis clinic or Transplant Center should help with Medicare filing. I hope this is helpful.
Let me throw in some comments. Legestation was just passed within the last year about immunosuppression drugs for Tranaplant and I believe medicare will cover these drugs forever..check it out!
I believe that s the HR5534 bill due to start on Jan 2023. If anyone knows how to get involved in that to get enrolled or how it’s going to be handled please post it. My social workers don’t even know about this yet. Trump pushed it thru in another package. The whole thing is in the hr5534. You can google it.
I had my transplant 19 years ago and was on Medicare Part A due to my ESRF at the time. I have now turned 65 and switched to Medicare Part A & B plus a Plan G supplement. My expectation is to have my immunosuppressant drugs filled with Medicare Part B for 80% and the balance picked up by my Plan G supplement, resulting in out of pocket for me of $0. It is very difficult to manage though, all the on-line pharmacies I have called so far don't support prescription coverage by Medicare Part B. Anyone know of one? I w ill post updates as I progress.
I am working the same issue right now --- trying to find a good Plan F or G supplement to pick up the 20% not paid by Medicare. Will report back.Changing subjects:
You were on Part A at the time of your transplant. Who paid for your immunosuppressants over the last 19 years?
Now that you have added Party B, are you sure Medicare will even pick up its 80% for the immunosuppressants? Someone told me you had to have Part B in effect at the time of the transplant.
Another: Aside from getting a Medigap Plan F or G, don't you also need a Part D Prescription Drug Program?
My immunosuppressants were covered by my company's health plan which was great! My information from Medicare lists the conditions for qualifying for Part B coverage as:"Anyone who meets the following criteria are eligible for indefinite coverage of their transplant immunosuppressive medications under Medicare Part B:
- Received a kidney transplant from a Medicare-approved facility.
- Was eligible for Medicare at the time of their transplant and applied for Medicare prior to the transplant (even if they were not enrolled at that time). It does not matter if - Medicare was the primary or secondary payer to other insurance.
- Does not have Medicaid.
- Does not have other public or private health insurance with an immunosuppressive benefit."
I went under Medicare while on dialysis prior to my transplant and they were my secondary at the time of the transplant. So I believe I am eligible, I will know in the coming days as I am placing my first order under Medicare.
And thirdly, yes, I have a Part D plan for the drugs I take that are not related to my immunosuppressants. A Part D plan is essential, even if you don't have other drugs today. There are penalties that come into effect if you try to get on a Part D after your initial enrollment period has expired when you turned 65.
By the way, I went with a Plan G supplement (Medigap) as opposed to am Advantage plan because we travel alot and Advantage plans don't work as smoothly in other states. Advantage may be the best if you stay close to home.
It sounds like you were on BOTH Medicare Part A and Part B when you went on dialysis, and were on BOTH at the time of your transplant. Correct?
If so, I agree with your interpretation that your immunosuppressants will be covered 80% by Medicare and the 20% will be covered by your Plan G supplement.
But: if you were only on Medicare Part A at the time of your transplant, I scratch my head about interpreting the language you quoted. It seems to suggest that you have to have at least APPLIED for Medicare Part B at the time of your transplant. So, if you were transplanted on May 5 and applied for Part B on May 20 your immunosuppressants would NOT be covered by Part B?
Honestly, I don’t recall, it was almost 20 years ago and frankly I was in pretty rough shape at the time. I think Part A only. I did call Medicare though and they confirmed I was on “Medicare” at the time of my transplant. Sorry.
My understanding is that you just had to be ELIGIBLE to apply for Medicare B during that 36-month time period following the transplant. (You did, I believe, have to have enrolled in Medicare A so that, at least retroactively, you were "covered" by Medicar e A even if Medicare A was not tapped to pay your bills.)
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Is there anyone out there who wishes they didn’t get the transplant and would have just stuck to dialysis? 
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