Is Medicare Required Post-Transplant?

[Deanne]

I understood that I was required to carry Medicare for three years post-transplant even if I have insurance through work, and if I failed to comply then Medicare would NEVER cover future CKD costs. Therefore, I've been paying through the nose for insurance I don't want, don't need, don't use. Someone told me today that she has a transplant but never got Medicare, and it made me wonder if I misunderstood something long ago, have been paying for it for no reason, and I can cancel it.

I tried calling the Medicare office today for confirmation one way or the other. After being put on hold several times, the guy who was trying to answer my question finally came back online to tell me that no one in their office knows if it's required. He told me to try calling Social Security instead.

Has anyone here heard of this as a possible requirement and came up with an answer one way or the other?

[Rerun]

It is not a Social Security Issue.  People fought to keep Medicare for 3 years post transplant to help with the expensive medications.  Call your transplant financial coordinator AND keep calling Medicare.  Let us know the answer.  Does your insurance pay 100% of your drugs? 

[iolaire]

I'm not yet past the coordination period for dialysis. But I am paying a huge amount for Medicare.  The way I look at it is my deductible on my primary insurance is about $3000/year and I pay Medicare about $2400/year.  So if they pickup my co-pays up to the $3,000 mark I come ahead about $600.  Now I've not seen that Medicare paid much via the online tool.  But I did not have to pay the $3000 to DaVita in January that I did last year, so some how it worked out.  But maybe DaVita was told to bill my for my co-pay from my insurance and they ate that cost since they want the $1,500/session my insurance pays, not the $200-$300 that Medicare will cover..

So my question is post transplant is Medicare covering your transplant co-pays?  I'd expect that coverage could cover the Medicare costs?

[MooseMom]

I've never heard that tx patients are required to sign up for Medicare nor that they will be denied future benefits if they do not.  That's not what their publication says.

[nursey66]

My hubby was on my work insurance and also had insurance at his work ,so we opted not to get Medicare at the time of his renal failure. His work nicely kept him on their insurance for 2 years more, even though he was unable to return to work due to other medical reasons. He was a full time EMT for an Ambulance Service. Unfortunately the service was sold and that was the end of the insurance. So we signed him up for Medicare , however they wouldn't cover the costs of the anti rejection drugs,since he was on private insurance at the time of transplant. It was still all good, my insurance had a 35 dollar copay.  Then I hit 65 and wanted to retire!! I am 7 years older than him.  After checking the Medicare stuff , I was unable to stop working, needed to for the insurance. I worked until 67 years old , and quit when his transplant stopped working.   He just got another transplant 3 weeks ago  , and I am so glad we had Medicare for the transplant !!  They are covering 80 % of the anti rejection meds . If I would have known all this with the 1st transplant ,we would have signed him up for sure.   Sorry this is so long, I didn't want to leave anything out, 

[Michael Murphy]

In January I will have been on dislysis for 33 months and by law Medicare must become my primary insurance.  What really torts me is that since there was no cola for social security for 2016 6 out of 7 Medicare users will not be effected by the increase in Medicare costs, this is because they have the payments deducted from their social security check.  That means any new Medicare users and any one who sends in a check to Medicare will pick up the entire amount of the increase the increase will be huge, I think it will double the premium for these people, and unfortunately I will be one of those people. Coupled by the republican cut of 20 percent coming to social security disability next year I feel like the old country so if it wasn't for bad luck I would have no luck at all.

[Angiepkd]

I signed up for Medicare when I started dialysis.  It was secondary to my private insurance.  I can honestly say that they covered (between the two) all of my expenses.  I have a $5000 deductible, and I didn't get anywhere near that amount.  Not sure how it all worked out, but I do know it worked.  They also covered my co-pays for all of my doctor visits.  During that time I had several surgeries and never received a bill.  When I got my transplant, I didn't receive any bills, either, except for a couple of things that were deemed not covered.  I was in intensive care for almost 3 weeks this past December, and also only got a couple of bills.  Nothing totaled more than $500.  My anti-rejection meds were $0 once I hit the Medicare co-pay amount, which I think was around $350?  I was debating keeping it too, since I seem to be back to my normal self, but am not sure it's worth the risk.  I know if I just have my private insurance I will pay the $5000 out of pocket each year, plus a $60 co-pay for every doctors visit.  I average at least 2 visits per month between transplant clinic and infectious disease doc.  For me, it makes sense to keep it, but if you have super private insurance, it may not be.  Sorry to be so confusing, but it really is confusing lol.   

[Deanne]

It sounds like I'm stuck with Medicare until 2017 then - my 3-year transplant anniversary. I'm in the same boat as Michael Murphy and must avoid nursey66's situation. The pending premium increase scares me but I can't afford the risk of something happening to my primary (work) insurance and being left with nothing.

[cattlekid]

Let me tell you the tale of what happened to me.

I work for a very large multinational corporation.  Our insurance has always been stellar, with a $2000 OOP maximum per year and very reasonable premiums. 

Therefore, while I was on dialysis, I chose not to opt for Medicare during the 30 month coordination period.  Because I was able to shelter the $2000 in an FSA, with the tax savings it didn't make sense to lay out the $1200 for the year for Medicare.

I had my transplant during the 30 month coordination period.  Once I had my transplant, I did back pay my Part B premium to the date of my transplant so that Medicare was technically in effect at the date of my transplant. 

Like an idiot, I thought being "eligible" for Medicare meant that you could take it if you needed it but it wasn't required so I ignored the next Premium Due notice from Medicare.  As soon as my 30 month coordination period was over, I found out that I was up a creek.  Medicare was going to quit paying because I hadn't paid my premium and my employer insurance said they were secondary to Medicare and they would only pay what Medicare didn't pick up and they would only do that after I had met my out of pocket maximum for the year.

After a lot of fast talking and writing a big check to Social Security, I got my Medicare Part B back.  Now, I have to pay the $105 per month plus my employer premium.  Since my employer would pay less than Medicare due to contracted rates, I am carrying my employer insurance purely to cover my husband.  I have to pay the Medicare Premium, the employer premium plus all of my copays that my employer insurance doesn't cover. 

IT SUCKS.  I wish I never had to take Medicare.  My employer is barely saving anything since I have had minimal health care needs since my transplant other than monthly labs and standard doctor visits.  I feel like I throw my $105 per month down the rabbit hole.  Plus I despise having to use Medicare for my transplant meds because of their asinine rules about only getting 30 day supplies.  It makes me mental that I can only have a few days backup on hand. 

Now I'm going to have to pay 50% more per month for this aggravation.  I am so happy that my 36 months post-transplant will be coming up in April and I can tell Medicare exactly where to stick everything, especially since my employer insurance is not going to have any cost increases for next year so I know for sure I'll be coming out ahead and with a lot less aggravation.

[Deanne]

For anyone who has this question in the future, I found something in writing:

https://www.medicare.gov/Pubs/pdf/10128.pdf


This is on page 16:

Do I have to get Medicare if I already have an employer or union group health plan?

No, but you should think carefully about this decision. If you get a kidney transplant, you’ll need to take immunosuppressive drugs for the rest of your life, so it’s important to know if they’ll be covered. If you’re eligible for Medicare only because of End-Stage Renal Disease (ESRD) (you’re not over 65 or disabled), Medicare Part B will only cover your immunosuppressive drugs (see pages 27–28) if you already had Medicare Part A at the time of the transplant, and the transplant surgery was performed at a Medicare-approved facility. Part B will only cover the immunosuppressive drugs after you’re enrolled in Part B. There won’t be any retroactive coverage.

[MooseMom]

I'd read the same thing, Deanne, but it didn't make sense to me because since I had never been on dialysis and therefore had never been on Medicare, how could I have possibly already have been on Part A  at the time of transplant?

[Deanne]

I'd read the same thing, Deanne, but it didn't make sense to me because since I had never been on dialysis and therefore had never been on Medicare, how could I have possibly already have been on Part A  at the time of transplant?

I remember being told somewhere in the past that I had until 30 days post-transplant to apply, but I applied when I started dialysis because I knew transplant would be right around the corner and I didn't want to worry about that 1-month deadline if I wasn't feeling well.