1. < Transplants

Transplant News and Events

Posted by Kristin Eggebraaten @keggebraaten, Feb 20, 2018

Hello everyone!
Many events are held each year and many news stories are published that may interest the transplant community. We thought it might be nice to let people know of some of these events and stories, even if they may not apply to everyone. In this discussion, feel free to post events and news stories that might be of interest to transplant patients, caregivers, or donors.

Of note, be sure that your posts don’t violate any of the rules of Connect – you can find those here: https://connect.mayoclinic.org/community-guidelines/.
Specifically, please be sure you don’t post commercial postings, advertisements or solicitations.

  • Postings such as advertisements for your business, get-rich-quick schemes or solicitations for a charity will be removed. Unfortunately, it is impossible to verify the validity of each and every organization that solicits donations; therefore, to protect you from fraud, we must prohibit solicitations for charities.

What events are you looking forward to?

Interested in more discussions like this? Go to the Transplants Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 24, 2021
In reply to @keggebraaten "Educate, Engage and Empower: A virtual symposium for bone marrow, stem cell and cord blood transplant..." + (show)
@keggebraaten

Educate, Engage and Empower: A virtual symposium for bone marrow, stem cell and cord blood transplant survivors and caregivers hosted by BMT InfoNet. Mayo Clinic is proud to partner with BMT InfoNet to bring valuable information about post-transplant issues to survivors, caregivers and healthcare providers. Register at http://www.bmtinfonet.org/2021symposium Join us April 17-23.

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Thanks, @keggebraaten. I think @loribmt and other fellow BMTers and SCTers like @kjjjrader @tedwueste @rwalkie @tmvanla @waveg @duttasujata @edb1123 @mjpm2406 @buckyc71 @javajude @jeaniecm @evett @ckeys @jeremy88 @chickey @mjrussell2 @motherboard @lel @gorjis1 @zellheff @auntieoakley @craigkopcho @bobby2014 and @lakegirl409 will be interested in this Mayo Clinic and BMT InfoNet Symposium.

It's quite the line up of speakers over the week from April 17-23. And it's virtual. So people can attend from the comfort of their own home and attend the sessions that interest them.
- Link to Register: https://www.bmtinfonet.org/2021-celebrating-second-chance-life-survivorship-symposium-0
- Link to the Agenda and Session Descriptions: https://www.bmtinfonet.org/agenda-2021-celebrating-second-chance-life-survivorship-symposium
- Link to How to Attend a Virtual Symposium: https://www.bmtinfonet.org/how-does-virtual-symposium-work-0

REPLY
2 replies
Kristin Eggebraaten | @keggebraaten | Mar 23, 2021

Educate, Engage and Empower: A virtual symposium for bone marrow, stem cell and cord blood transplant survivors and caregivers hosted by BMT InfoNet. Mayo Clinic is proud to partner with BMT InfoNet to bring valuable information about post-transplant issues to survivors, caregivers and healthcare providers. Register at http://www.bmtinfonet.org/2021symposium Join us April 17-23.

REPLY
1 reply
Mentor
Dana, Volunteer Mentor | @danab | Jan 20, 2021

To all I did check with my prescription plan express script which is Thursday Tricare for life that I get with Medicare part b and I too am a bit young for Medicare but if your declared disable after 2 years you get Medicare no matter what age. So it seems I'm not eligible for the meds thru Medicare but I don't pay much anyway. Thru Tricare express script it's only 10.00 for 90 day supplies. So I haven't bothered trying to call Medicare as to why I'm not eligible as a Heart transplant but I do know it seems for a few government thinks being in renal failure gets you things a lot earlier.
Blessings All
Dana

REPLY
jolinda | @jolinda | Jan 18, 2021

Turns out that was for health insurance but life insurance was not included.

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JK | @contentandwell | Jan 18, 2021
In reply to @jolinda "@contentandwell I think it's strange that various transplants are treated differently as well, I imagine there..." + (show)
@jolinda

@contentandwell
I think it's strange that various transplants are treated differently as well, I imagine there is some long rediculous story surrounding such nonsense. I've been part of a group around the US who are trying to get Living Kidney donors included in laws that protect them from health and insurance discrimination. Laws exist for marrow donors but solid organ donors were never included. Ahhh political posturing.

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@jolinda I thought the laws had changed about excluding donors from health insurance discrimination. When my daughter was pushing to be a living donor for me that was one of my concerns but I was sure that sometime since then I had heard that was no longer true.
JK

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jolinda | @jolinda | Jan 18, 2021
In reply to @contentandwell "@rosemarya @jolinda It's very odd I think that kidney and liver transplants would be covered differently...." + (show)
@contentandwell

@rosemarya @jolinda It's very odd I think that kidney and liver transplants would be covered differently. Per Jolinda though, this is not for those of us who are on Medicare anyway.
JK

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@contentandwell
I think it's strange that various transplants are treated differently as well, I imagine there is some long rediculous story surrounding such nonsense. I've been part of a group around the US who are trying to get Living Kidney donors included in laws that protect them from health and insurance discrimination. Laws exist for marrow donors but solid organ donors were never included. Ahhh political posturing.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 18, 2021
In reply to @contentandwell "@rosemarya @jolinda It's very odd I think that kidney and liver transplants would be covered differently...." + (show)
@contentandwell

@rosemarya @jolinda It's very odd I think that kidney and liver transplants would be covered differently. Per Jolinda though, this is not for those of us who are on Medicare anyway.
JK

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It is because Medicare has a clause/section for coverage for patients on Dialysis and ESRD (end stage renal disease). It is all explained in the US Government Medicare Plan. This medication extension is a new addition as stated in the link I sent.
As for myself, I qualified and was enlisted with Medicare because of ESRD and dialysis before I was 65. That is the only reason I know a little about it. My insurance reps handled the forms and I had to file. (I don’t remember all of the details).

REPLY
JK | @contentandwell | Jan 18, 2021
In reply to @rosemarya "@contentandwell @danab - The information that @jolinda posted is related to the immune suppression drug coverage..." + (show)
@rosemarya

@contentandwell @danab -

The information that @jolinda posted is related to the immune suppression drug coverage for Kidney Transplant patients.

It does not relate to your drug coverage as liver or heart transplant patients. It can be confusing and so I am posting a link that gives a quick explanation -

Congress passes immunosuppressive drug coverage expansion for kidney transplant patients
by American Society of Nephrology
https://medicalxpress.com/news/2020-12-congress-immunosuppressive-drug-coverage-expansion.html

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@rosemarya @jolinda It's very odd I think that kidney and liver transplants would be covered differently. Per Jolinda though, this is not for those of us who are on Medicare anyway.
JK

REPLY
2 replies
estrada53 | @estrada53 | Jan 18, 2021
In reply to @cehunt57 "Thanks everyone for the posts on medicare & immune suppression. There are SO many factors that..." + (show)
@cehunt57

Thanks everyone for the posts on medicare & immune suppression. There are SO many factors that weigh into this (age, type of transplant, coverage/payment for transplant .....) that it gets really confusing! I’m not typically old enough for medicare either (I’m 63) but I qualified for medicare part A 15 years ago due to disability. That is when I had my pancreas transplant (2005). This past year due to COVID my husband lost his job & insurance. We started COBRA insurance but quickly found out that I was eligible for medicare part B and that it was considered to be my primary insurance. (To BAD I wasn’t signed up for it!) I immediately got signed up for part B, part D and a medigap supplement policy. My husband found new policies for himself too.
Flash forward to now. The medicare immune suppression coverage is STILL chaotic but I’m starting to get my “parts” in place and member cards on file. I have had various entities from my previous insurance and medicare tell me that immune suppression coverage falls under part B, part D and even under durable medical equipment! I was also told that it depends on the organ transplanted, how the transplant was covered, whether there was prior authorization for the medication and how long the medication would be prescribed (as if transplant patients can stop taking their immune suppression at some point)! It sure is a “clusterf————“! Sorry Siri couldn’t find an acceptable alternative word.
Meanwhile I continue to take my meds and am still SO thankful to God for my transplant. I believe that providing immune suppression shouldn’t be a problem for God. But He does work in mysterious ways. I’ll update again if/when I learn anything that may be useful regarding the payment for immune suppression.

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Hello! I was told that since I was not of Medicare age when I had my transplant, Plan B would need to cover my meds. It was truly a back and forth feud for awhile with Medicare. Currently, I pay 13.30 for my Sirolimus for 90 days and 14.40 for Mycophenolate (cellcept) for 30 days. My prednisone- which I will take for life- is 10.00 for 90 days. My pension pays 50% of my supplemental AARP UNITED HEALTH CARE insurance and that includes prescription coverage. Very fortunate.

REPLY
jolinda | @jolinda | Jan 18, 2021
In reply to @cehunt57 "Thanks everyone for the posts on medicare & immune suppression. There are SO many factors that..." + (show)
@cehunt57

Thanks everyone for the posts on medicare & immune suppression. There are SO many factors that weigh into this (age, type of transplant, coverage/payment for transplant .....) that it gets really confusing! I’m not typically old enough for medicare either (I’m 63) but I qualified for medicare part A 15 years ago due to disability. That is when I had my pancreas transplant (2005). This past year due to COVID my husband lost his job & insurance. We started COBRA insurance but quickly found out that I was eligible for medicare part B and that it was considered to be my primary insurance. (To BAD I wasn’t signed up for it!) I immediately got signed up for part B, part D and a medigap supplement policy. My husband found new policies for himself too.
Flash forward to now. The medicare immune suppression coverage is STILL chaotic but I’m starting to get my “parts” in place and member cards on file. I have had various entities from my previous insurance and medicare tell me that immune suppression coverage falls under part B, part D and even under durable medical equipment! I was also told that it depends on the organ transplanted, how the transplant was covered, whether there was prior authorization for the medication and how long the medication would be prescribed (as if transplant patients can stop taking their immune suppression at some point)! It sure is a “clusterf————“! Sorry Siri couldn’t find an acceptable alternative word.
Meanwhile I continue to take my meds and am still SO thankful to God for my transplant. I believe that providing immune suppression shouldn’t be a problem for God. But He does work in mysterious ways. I’ll update again if/when I learn anything that may be useful regarding the payment for immune suppression.

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Here is a happy transplant story that will add some joy to your day...
https://newsnetwork.mayoclinic.org/discussion/chain-of-transplants-gives-gift-of-life-to-minnesota-teacher/

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