Good morning🙂
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
Mental health post transplant.
A New Member With A Tough Question 
Any Experience With Living Donor From Overseas Who Has No U.S. Insurance?
Medicare and Transplant
question is there a differnt 
Jay hawker,
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.
Thank you for this wealth of information. Do we have to meet a certain age requirements to sign up for Medicare related to a transplant?
No. Transplants allow you to be eligible.
But after three years of coverage you will lose it if you aren't over the age of 60?
I am not entirely sure. Better gocheck at Medicare.gov for an answer.
I think the 33 month limit or something related to it was changed during the Trump administration so I would check again.
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?
Rather than giving you the wrong answer, I suggest you look at the info page for ERSD Medicare.
medicare.gov/manage-your-he...
Thank you very helpful.
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
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.
Yep, that’s what the financial coordinator st my transplant center says too.
Jayhawker
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?
Here is an excerpt from medicare.gov
If you have Medicare only because of permanent kidney failure, Medicare coverage will end:
12 months after the month you stop dialysis treatments.
36 months after the month you have a kidney transplant.
Your Medicare coverage will resume if:
You start dialysis again, or you get a kidney transplant within 12 months after the month you stopped getting dialysis.
You start dialysis or get another kidney transplant within 36 months after the month you get a kidney transplant.
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.
Jayhawker
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!
Jayhawker
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.
Yes, I feel bad for anyone who did not receive this guidance while they were still in the hospital.
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.
That was my question exactly!😁
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.
Probably cheaper as well.
Thank you so much for sharing your experience. Do you know how much copay for brand name drug is per month?
Yes,
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.
Hope this helps
Yes that does help a lot. Thank you so much!
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.