How do you get ESRD Medicare if you get a preemptive kidney transplant (before dialysis has begun).

Does anyone know the particulars of getting ESRD Medicare prior to the start of dialysis? Medicare’s guidelines say that you qualify in the month that you receive a kidney transplant, but they don’t say what day of the month or if you start your application after you have already received the transplant. This is significant because Medicare states that the anti rejection drugs are not covered unless you already have Medicare part A &B at the time of the transplant. But if you can’t even apply until after you have the transplant, how is it possible that you would have coverage prior to the transplant?

Up till now, I had planned for my insurance through the affordable care act to pay for the transplant and anti rejection drugs. Now I am concerned that this will cause a problem down the road because Medicare won’t cover the anti-rejection drugs if they did not also pay for the transplant.

Your insights and advice will be most appreciated.

[Hidden]

Howdy...

If you're not eligible for medicare — other than being ESRD — medicare lasts for 3 years after your transplant. That is my understanding at least. However, congress passed legislation this past year that — that starting in 2023 — prescription coverage for imunosuppressants will be included for transplant patients. "The legislation ensures that Medicare covers the cost of immunosuppressive drugs if no other coverage is available."

In my own case, I had a living donor transplant just over a year ago when I was 50 years old. I was eligible for medicare due to ESRD and, obviously, not my age. I was on dialysis 5 weeks prior to transplant. I believe once one has been accepted for Medicare, coverage begins the month you start dialysis (e.g. PD catheter placement and first use/flushing during training in my case). However, since I have BCBS (e.g. they are the ones who covered my transplant) and didn't opt for prescription coverage via Medicare, I recently dumped medicare. They really didn't pay a dime pre/post transplant. Actually, I didn't even receive my Medicare card until I returned home after surgery.

I know HMOs get a bad rap overall. In my case, BCBS HMO paid for just about everything in my a) stage 1 cancer surgery, b) PD catheter, and c) very expensive robotic kidney transplant. Also, I have little to no co-pays for my monthly labs or pharmacy visits. Cool!

Best Wishes,

Christopher

[Hidden in reply to Hidden]

Congratulations on your transplant. I’m glad to hear that BCBS paid well. Will you be able to keep them for the rest of your life or will you switch back to Medicare at some point?

[Hidden in reply to Hidden]

What type of plan is your BCBS HMO? privateMedicare advantage plan?

Private? Employer? Obamacare?

Do you know the exact name of the plan?

[Alfredmynewkidney]

Hi. I have great insurance but applied for Medicare after my transplant. I had a preemptive transplant. The coverage starts the first of the month of your transplant. I was told I could be on it for 3 years. My insurance pays pretty much everything. I have no idea how it will be when I retire. Which will be more than 3 years after my transplant.

[Hidden in reply to Alfredmynewkidney]

Since your insurance paid for your transplant (not Medicare), is that going to cause Medicare to refuse to pay for the anti-rejection drugs once you ultimately do retire? It probably won’t be a problem, but I read and hear about so many different restrictions that I am in a very confused state.

[Alfredmynewkidney in reply to Hidden]

I would sure hope not! I'm 54 so planning on working for awhile. That doesn't seem right that they wouldn't cover meds. But they will pay for dialysis and another transplant? Craziness!! But it is the government

[Darlenia in reply to Hidden]

No worries. When you go on Medicare, Medicare will step in and take over to the extent they do with everyone else. The Affordable Care Act prohibits discrimination for pre-existing conditions. The Medicare office near you will likely be more than happy to talk to you.

[Herkidney]

The financial person/advisor at your transplant center should be able to answer your questions thoroughly. Please ask your transplant center to direct you to that person. Best wishes!

[Hidden in reply to Herkidney]

Thank you!

[DexterLab]

I got my transplant at age 64. My insurance from work paid for everything. I still applied for Medicare A and B, and Medicare made it retroactive to the time of the transplant. Since I will be over 65 when the 3 year clock runs out, Medicare will continue. Medicare started as my secondary insurance, but transitioned to primary after 30 months. No issues with Medicare not paying for the transplant.

The financial people at the transplant center should be able to help with your questions.

[Hidden in reply to DexterLab]

Thank you!

[horsie63 in reply to Hidden]

I just had my first meeting with the transplant team to get listed. I'm 58 and have insurance through my employer and secondary through my husbands. We were told after the surgery take Part A and start timing the months and then just before the 30 months run out take Part B as it has premiums and since I'm covered no point in paying them before I have to. So it's my insurance first, husband's second and Medicare Part A third until I reach 65 and if no longer working Medicare first then my husbands as he's 8 years younger.

[Gardner-NY]

I know alot about this issue for it is the situation my husband who had a kidney transplant at age 59 is in now. He never had dialysis and my medical insurance for a family plan is very good. Long story short so I don't make this complicated: when my spouse got his transplant on 11/28/18 and in the hospital 5 days after surgery; the day prior to leaving the transplant financial coordinator/social worker came to his bedside (I was not there yet), and he filled out paperwork for MEdicare (now we know for he was not told by anyone to take A& B together). Medicare picks the 1st day of the calendar day you had your transplant, so Nov 1 2018 is when the calendar counts off 36 months for medicare to 'end' since he is not 65 now. Actually 10/31/21 is the 36th month, but now social security office called us last week and said his medicare will be active until 12/31/21. We've been told so many different stories on when it ends it is ridiculous. So the first 30 months your regular medical insurance is primary , then medicare is 2nd. At the last 6 months, Medicare is primary and your other insur is 2nd. For us, we are both retired military and also have Tricare which is last in this scenario. You want to make sure to take A&B together. My brother in law had a kidney transplant and he did not take the Medicare when first offered at age 57, and when he started medicare at age 65, medicare would not pay for his antirejection meds, which then was $1200 a month. Medicare paid for other medical things, but not this because they told him he had to take medicare when first offered and he thought his primary medical insur was very good and not bother with medicare. For us, being on medicare has been nothing but alot of problems with them not paying for claims for many months and me on the phone for hours to get simple things correct so they did pay. I wish you luck because our transplant coordinator knew zero about all of this and we had to learn the hard way 'after the fact'.

[Hidden in reply to Gardner-NY]

Dear Gardner – NY,

That is what I am seeing. My transplant coordinator either doesn’t return calls or doesn’t even understand the nuance of the question. She might answer “Yes, Medicare does cover transplants“. One big concern that I have is that Medicare guidelines clearly state that they will only pay for anti rejection drugs if they also paid for the transplant itself.

I think your experience outlined above that you simply apply for Medicare after your transplant and coverage is retroactive to the first day of that month is probably the most helpful statement that I have heard so far. That addresses my other big concern about exactly when can you apply for Medicare if you were getting a preemptive transplant.

I agree with your assessment that Medicare is difficult to deal with, but my current health insurance is through the Obamacare (affordable care act) program. I don’t think it is treated the same as employer provided health insurance with the 30 month coordination period. In fact, I think it automatically becomes secondary or maybe even canceled as soon as you apply for Medicare. Still working on understanding that issue.

Thank you for all your feedback. It is very helpful!

[Gardner-NY in reply to Hidden]

HI Stahol7: After my spouse took Medicare while in the hospital days after his transplant surgery, no one had told him to also sign up for Medicare B, he only signed up for A. We thought since I have good medical insur at my job for us, we were set. Months go by and we find that due to not taking B plan with A, that my spouse military medical benefit "tricare" was 'dropped' without warning and it pays alot of copays. I had to do an appeal with social security office and get medicare B retroactive to the correct date all due to not being told what was right, always take A&B together when offered. We got that fixed and we've been paying the medicare every 3 months and May 1,21 was the last 6 months of the 'coordination of benefits' (which is 36 months total). Well my spouse just called me 5 min ago to say medicare has confused things by just now sending him a'silver scripts ' perscription card (w hy didn't he get that in May2021 when medicare became primary insur?). The medicare ends totally 12/31/21 we are being told and this 'silver script card' may mess up his formulary drugs. He's making many phone calls on that today. We have yet to talk to anyone at transplant or medicare that knows how ESRD /transplant works for a retired military member not age 65 yet. All his meds when medicare was primary since 5/21 have been paid for by medicare and his blood work and dr visits. But the first 30 months medicare was 2nd payer and they were denying claims all the time. We have not been happy with this service. We are having to figure out everything on our own . write me anytime.

[Hidden in reply to Gardner-NY]

Hi Gardner-NY,

I feel your frustration. Something as small as not taking Part B back when you first got Part A can sure cause a lot of problems. I will definitely take your advice and get part B right off the bat.

It seems when I ask my transplant social worker or Medicare person a detailed question I get a generic response like “it depends on your specific situation” to which I think to myself “of course it does, that is why I gave you all my specifics before asking the question! They are quite adept at getting me off the phone without giving me an actual definitive answer.

I currently have an Affordable Care Act (Obama Care) policy through Ambetter (a pretty good policy). In some resources that I have read, it says that Ambetter will cancel as soon as I am eligible for Medicare since they only exist to cover people with no other insurance options. In other places, it says that I can keep Ambetter as long as I want, but they will cancel after I actually apply for medicare. The quandary is that I would like to keep Ambetter because they have the maximum out-of-pocket annual cap which would be much to my advantage. However, Medicare seems to have this rule that you must have Medicare at the time of your transplant or they will not pay for the immune suppressant drugs going forward. Also, why does the transplant center insist on qualifying me under Ambetter if they are going to get canceled anyway when I switch to Medicare? Perhaps for the pretransplant services. The new Medicare expanded coverage (no 36 month limit!) for anti-rejection drugs states that you have to have at least applied for Medicare PRIOR to your transplant. This seems to pretty much eliminate the possibility of getting a deceased donor transplant before going on dialysis unless the transplant center can somehow submit your application just before doing the transplant and getting it timestamped and acknowledged by Medicare.

Thank you so much for your detailed and thoughtful reply. I hope you and your husband are able to straighten out the issue with the silver script card card. It would also be great if he were covered under the new expanded anti rejection drug coverage. What were you told about that?

[Gardner-NY in reply to Hidden]

Hi Stahol7, Are you already 65 or older in age? My spouse is not and maybe that is why his situation with insurance and medications could be different. My medical insurance I have where I work 'family plan', I can keep when I retire and pay for it. When the 36 months of coordination of benefits ends for my spouse (now we are told by soc security this week that date is 12/31/21), my spouse will not be on medicare (he is 62) and will be primary back on my medical insurance and secondary is his military Tricare coverage. When he turns 65, my insurance will handle alot of the managing of it for that is something it does. I think if you are 65 and older and get the transplant and after the 36 months 'then' the antirejection meds would be covered by medicare. I don't know about the 'new' medicare pharmacy expanded antirejection drug coverage. We have not been told about that. We have found that unless you advocate for yourself in the insanity of medical insurances, you cannot depend on a coordinator at transplant to help, especially after the first year of transplant, its like they are done and you have to talk and solve issues directly with medicare. took me 9 months and talking to 13 different people about ESRD "end stage renal disease' with medicare to get them to pay what they should have paid all along. I've never seen such poor service. Like you don't have enough stress to deal with already. Write me anytime. Maybe my experience can help you or not, but I'll try.

[Gardner-NY in reply to Hidden]

One more thing I forgot to say: if you are not 65 yet and choose A&B medicare, I think the insurance you do have now will still be primary for 30 months and Medicare is 2nd; then at the last 6 months it reverses in order. That is how it worked for my husband.

[Hidden in reply to Gardner-NY]

I am 62 and plan to get Parts A & B once dialysis starts or I get a transplant. My insurance is through the affordable care act which is considered a public insurance. It will be treated differently than a employer insurance policy. The trickiest part seems to be structuring it and timing it so that the immune suppressant drugs will be covered indefinitely. It is my understanding that there will not be a 30 month coordination period because it us an Affordable Care Act policy. My current policy will be secondary as soon as I qualify for Medicare. I’m trying to get an appointment with Social Security and my social worker to go over all my questions. Maybe the social worker will still be willing to help since I am pre-transplant.

One of my questions is regarding the new expanded coverage. Your husband may qualify once he reaches 65 yrs if age if either Medicare paid for his transplant or if it was paid primary to Medicare by a private insurance company.

To read it yourself, go to:

medicare.gov/coverage/Kidne...

Scroll down to Transplant drugs. Read about “no time limit” criteria

[Gardner-NY in reply to Hidden]

Thanks for this information about the medicare changes for antirejection meds. My husband's transplant surgery was paid for by the primary employer's insurance and whatever they did not cover Medicare did and lastly tricare. To be honest, I never saw any claim/bill, explanation of benefits (EOB) on the surgery and hosp stay of a week (2 days in icu and 3 days in regular bed). I wish you the best. Insurances make things more complicated but you are smart to get ahead of things to learn from the start.

[horsie63 in reply to Gardner-NY]

Holy cow what a nightmare. I can't wait to see what happens when I go in for my first evaluation. I have Aetna through my employer, and as secondary UMR from my husband's work. I'm 58 now and will probably be 60, 61 before getting a transplant. Either way I'll sign up for both just in case.

[Gardner-NY in reply to horsie63]

Hi horsie63, Our social worker whom i thought would be useful with complex insurance issues was zero help. My spouse at age 59 had to be on Medicare and make those premium payments for 36 months which were to end Oct 31, 21 . BUT they did not end until FEb 2022 for ? reason. The entire time he was on Medicare was a nightmare . I bet I'd spend at least 90 min on the phone for every weekly phone call to get things straight and never did anyone give me a straight answer. All I can say is this: keep a notebook on every phone call and name,date,time you speak to anyone if you have to go onto Medicare. My brother in law had a kidney transplant and at age 57 had good insurance and 'offered' Medicare and said "no to it". Well, when he turned 65 and had to go on Medicare, Medicare did not pay for his antirejection meds. he did, $1200 a month! When you are offered Medicare before age 65, you really should say yes , or at least do your homework and not depend on what one person tells you. THis is very complicated when you are not 65. All my best

[Shanny1024 in reply to Hidden]

If I were you I would speak with your transplant center's social worker. In my experience, they are the ones who know the ins and outs of all types of insurance, medicare, accessing medication when/if you run into problems getting or paying for medication, etc. Maybe it's different in your area, but I've never dealt with a transplant coordinator in regards to any of my insurance or medication issues. Good luck!

[Hidden in reply to Shanny1024]

Hi Shanny1024,

I’ve been having trouble getting any detailed information out of the social worker. That’s why I post here. However, I agree with you that I should keep trying. They see a lot of cases and a lot of different situations and they should be able to advise me. I like WYOAnne’s suggestion that I make a face to face appointment with the social worker. That way I can bring some written materials with the issues highlighted that are causing my concerns. Little details like not getting Medicare part B at the same time as part A can cause big problems later on and the social worker should be able to give good guidance.

Thank you!

[Shanny1024 in reply to Hidden]

I"m so sorry that your SW hasn't been very helpful. I find that really shocking as I've always had wonderful, knowledgeable medical social workers. I always thought that being informed about all the ins and outs of insurance coverage, etc was the largest part of their job! I wonder if your SW is a recent graduate and still learning the ropes. Whatever the case, I hope that having a face to face meeting with her will get you the answers that you need! If not, perhaps speak with your transplant surgeon or nephrologist and see if they can find you someone else to advise you. Also, if you were on dialysis prior to your transplant, I bet the SW there would be able to guide you in the right direction. Wishing you all the best!

[Hidden in reply to Shanny1024]

Thanks Shanny1024. She is not a recent grad, but I think she has a heavy case load. Very hard to reach.

[WYOAnne NKF Ambassador]

The best thing to do is to go to the transplant center where you are listed and talk to one of the social workers there. Maybe call first and see about actually making an appt.. You do have Medicare for 3 years from when you sign up. Get the facts from a professional that deals with insurance "stuff" everyday. I don't want to tell you the wrong thing.

[Hidden]

Thanks WYO Anne!

[Alkaline1]

I didn’t have Medicare at the time of my transplant all my meds were covered. You file afterwards and it will date back to the day you go in the hospital. I was put on phosphorus and it was not covered because they say you can buy it over the counter

[Hidden in reply to Alkaline1]

Thanks Alkaline1. Great information. How long did it take Medicare to approve your ESRD eligibility and get your medicare card?

[Alkaline1 in reply to Hidden]

Just had transplant oct 28 2021 I had my paperwork sent the next day dated for the 27th which was when I went in hospital SS called the next week to verify some things said card would arrive in a few weeks and would be predated back to oct 1

[Hidden]

Got it! Thanks again. Happy Thanksgiving!