@Karin, while I'm no expert on all things related to kidney transplants, I believe most people sign up for Medicare during dialysis. And, it really helps (cost-wise) to be actively covered by Medicare at the time of transplantation.
I'm sharing some articles which provide quite a bit of relevant info.
I was on Medicare before I had kidney problems because I was on social security disability so I automatically got Medicare after two years of social security disability. But have you heard anything about Medicare stops paying for Immunosuppressive meds after 3 years out of transplant. I heard this from my transplant team that some Medicare will stop paying. 💚
In my current situation with Medicare, I currently have a commercial policy through my employer, and I was recently told that I should apply for medicare, I was told right when the 30 month period was to end that there is a chance that my commerical policy possibly wouldnt pay...but after a discussion with my carrier i found out that they will continue to be primary but for every year that i dont have medicare they will penalize me a percentage each year, but honestly I am not sure what is going to happen. Back in may i applied for medicare benefits and i hope to get some kind of answer soon. Hope that helps. Thanks @sam for sharing the above links. @karin, good luck on this journey.
@Howanitz39 - what you said about Medicare not paying for immunosuppression meds after 36 months, post transplant was true. But long pending legislation did finally get passed after 20 long years (Honor the Gift campaign). Effective this year, that rule no longer applies. Please refer to the link:
I am following this… I signed up for Medicare after transplant. I didn’t risk any penalty with my commercial policy, but my husband and I agreed it seemed like a good extra coverage. So far, its been a bit of a pain. Even though I updated all my providers with the Medicare information, I have yet to see anything accurately be billed to Medicare. I have a bad habit of just paying the bill when it arrives and not doubled checking and now I am redoing a bunch of stuff, so my advise would be to make sure when you receive your bills that theya re also charged to Medicare. Otherwise, you will be like me just throwing money around unnecessarily .
This is such a tough topic for me. Medicare is typically for patients who have worked for at least 10 years. Being 24..... I dont have all the credits to make me eligible for medicare despite being in ESRD. I had to stick with my private insurance and apply for the American Kidney Fund to provide financial assistance for my monthly premium. However, AKF stops covering premiums at the end of the year you get transplanted. So for me, I have until December. I will need to apply for medicaid. I am nervous about this and feel somewhat lost in the process of making sure I will be covered accurately.
I was scared to because I was told that the transplant centers would prioritize you if you were on private insurance, and more are available to you. They get paid more through private insurance. I don't know how true this is in practice, so I stayed with my more expensive private insurance.
@fern22 - I recommend you should definately apply for Medicaid, sooner than later. Don't wait for your existing coverage to lapse. Also, please take a look at some of the resources posted earlier within this thread - you may find some answers/ideas. That said, I'm sure you're aware that qualification/eligibility for state-based Medicaid is quite tough because of the income/asset thresholds etc. Also, every state has certain advocacy/social services agencies/bodies who help people sift through insurance coverage challenges. In fact, although it can be painful with long 'hold times' etc, sometimes Social security personnel can also be helpful. Good luck!
@coopscadoop - generally speaking, if one has Medicare coverage at the time of the Transplant - all things related to the hospital + meds etc are covered (within the guidelines etc). The hospitals are certainly not supposed to prioritize based on the type of insurance (if there is actively coverage) - that would be unethical and awful. That said, there could be instances where untoward things have happenned. CMS (Medicare) usually pays the bills (from Transplant centers etc), while Private insurance carriers can probably question & deny more things along the way.
In my case, I was glad I was covered under Medicare at the time - I wouldn't be able to afford the premiums nor the deductible limits which are usually a lot higher in the case of private carriers.
In most cases, transplant patients end up paying much less out of pocket, for the transplant, if they're covered under Medicare. Good luck!
I am 5 years post liver transplant. I had medicare disability at the time of my transplant. Medicare part d pays for most of my meds including tacro. I do pay a co-pyment on them.
I did NOT get Medicare until after my transplant, as I dont recall being told to go in it at the time I was diagnosed with ESRD. So my transplant team Social Worker completed the paperwork, had me check it and then sent it in. It took several months, but someone processed it wrong, so it didn't go retroactively back to my transplant date, as it should have. She talked to someone at Medicare and redid the forms and it eventually did go back to my transplant date.
However, I learned earlier this year that as I only had Medicare due to ESRD, (Per the medicare link at top) my coverage WILL end next June when I hit my three year date. It says right there: "If you only have Medicare because of End-Stage Renal Disease (ESRD), your Medicare coverage, including immunosuppressive drug coverage, ends 36 months after a successful kidney transplant." I am now left trying to find out if I can stay on Medicaid (state medicare) with my income, or if I'll have to pay WAY more out of pocket for private insurance or employer, as well as Supplemental and Part D coverage.
I wll go so far as saying that I am paying for the Part B coverage with "regular" Medicare, paying supplemental insurance and separate part D plan. All of this is about $500/USD per month. It's costly and now it will likely be WAY more unless I advocate for myself and fight to STAY on Medicare since the costs of going private and the co-pays for drugs would be of a great detriment to my way of life and could put me in danger of having to choose between my life-saving drugs and other expenses I incur. It is scary and stressful!
1 - 11 of 11 Replies
Transplant Patient
@Karin, while I'm no expert on all things related to kidney transplants, I believe most people sign up for Medicare during dialysis. And, it really helps (cost-wise) to be actively covered by Medicare at the time of transplantation.
I'm sharing some articles which provide quite a bit of relevant info.
1. https://www.medicare.gov/coverage/kidney-transplants
2. https://www.medicare.gov/basics/end-stage-renal-disease
3. https://www.myast.org/about-ast/presidents-blog/immuno-bill-passes-after-20-years
I hope these resources help.
Good luck!
Ps. The You Tube link is from a Webinar that I attended - related to cost of drugs covered my Medicare.
I was on Medicare before I had kidney problems because I was on social security disability so I automatically got Medicare after two years of social security disability. But have you heard anything about Medicare stops paying for Immunosuppressive meds after 3 years out of transplant. I heard this from my transplant team that some Medicare will stop paying. 💚
In my current situation with Medicare, I currently have a commercial policy through my employer, and I was recently told that I should apply for medicare, I was told right when the 30 month period was to end that there is a chance that my commerical policy possibly wouldnt pay...but after a discussion with my carrier i found out that they will continue to be primary but for every year that i dont have medicare they will penalize me a percentage each year, but honestly I am not sure what is going to happen. Back in may i applied for medicare benefits and i hope to get some kind of answer soon. Hope that helps. Thanks @sam for sharing the above links. @karin, good luck on this journey.
Transplant Patient
@Howanitz39 - what you said about Medicare not paying for immunosuppression meds after 36 months, post transplant was true. But long pending legislation did finally get passed after 20 long years (Honor the Gift campaign). Effective this year, that rule no longer applies. Please refer to the link:
@Sdey0522 thank you so much for sharing this with me. I feel now that there has been a weight lifted from my shoulders. 💚
I am following this… I signed up for Medicare after transplant. I didn’t risk any penalty with my commercial policy, but my husband and I agreed it seemed like a good extra coverage. So far, its been a bit of a pain. Even though I updated all my providers with the Medicare information, I have yet to see anything accurately be billed to Medicare. I have a bad habit of just paying the bill when it arrives and not doubled checking and now I am redoing a bunch of stuff, so my advise would be to make sure when you receive your bills that theya re also charged to Medicare. Otherwise, you will be like me just throwing money around unnecessarily .
This is such a tough topic for me. Medicare is typically for patients who have worked for at least 10 years. Being 24..... I dont have all the credits to make me eligible for medicare despite being in ESRD. I had to stick with my private insurance and apply for the American Kidney Fund to provide financial assistance for my monthly premium. However, AKF stops covering premiums at the end of the year you get transplanted. So for me, I have until December. I will need to apply for medicaid. I am nervous about this and feel somewhat lost in the process of making sure I will be covered accurately.
I was scared to because I was told that the transplant centers would prioritize you if you were on private insurance, and more are available to you. They get paid more through private insurance. I don't know how true this is in practice, so I stayed with my more expensive private insurance.
Transplant Patient
@fern22 - I recommend you should definately apply for Medicaid, sooner than later. Don't wait for your existing coverage to lapse. Also, please take a look at some of the resources posted earlier within this thread - you may find some answers/ideas. That said, I'm sure you're aware that qualification/eligibility for state-based Medicaid is quite tough because of the income/asset thresholds etc. Also, every state has certain advocacy/social services agencies/bodies who help people sift through insurance coverage challenges. In fact, although it can be painful with long 'hold times' etc, sometimes Social security personnel can also be helpful. Good luck!
@coopscadoop - generally speaking, if one has Medicare coverage at the time of the Transplant - all things related to the hospital + meds etc are covered (within the guidelines etc). The hospitals are certainly not supposed to prioritize based on the type of insurance (if there is actively coverage) - that would be unethical and awful. That said, there could be instances where untoward things have happenned. CMS (Medicare) usually pays the bills (from Transplant centers etc), while Private insurance carriers can probably question & deny more things along the way.
In my case, I was glad I was covered under Medicare at the time - I wouldn't be able to afford the premiums nor the deductible limits which are usually a lot higher in the case of private carriers.
In most cases, transplant patients end up paying much less out of pocket, for the transplant, if they're covered under Medicare. Good luck!
I am 5 years post liver transplant. I had medicare disability at the time of my transplant. Medicare part d pays for most of my meds including tacro. I do pay a co-pyment on them.
I did NOT get Medicare until after my transplant, as I dont recall being told to go in it at the time I was diagnosed with ESRD. So my transplant team Social Worker completed the paperwork, had me check it and then sent it in. It took several months, but someone processed it wrong, so it didn't go retroactively back to my transplant date, as it should have. She talked to someone at Medicare and redid the forms and it eventually did go back to my transplant date.
However, I learned earlier this year that as I only had Medicare due to ESRD, (Per the medicare link at top) my coverage WILL end next June when I hit my three year date. It says right there: "If you only have Medicare because of End-Stage Renal Disease (ESRD), your Medicare coverage, including immunosuppressive drug coverage, ends 36 months after a successful kidney transplant." I am now left trying to find out if I can stay on Medicaid (state medicare) with my income, or if I'll have to pay WAY more out of pocket for private insurance or employer, as well as Supplemental and Part D coverage.
I wll go so far as saying that I am paying for the Part B coverage with "regular" Medicare, paying supplemental insurance and separate part D plan. All of this is about $500/USD per month. It's costly and now it will likely be WAY more unless I advocate for myself and fight to STAY on Medicare since the costs of going private and the co-pays for drugs would be of a great detriment to my way of life and could put me in danger of having to choose between my life-saving drugs and other expenses I incur. It is scary and stressful!