[monica1122]

MEDICARE won't cover stem cell storage

by monica1122 on Thu May 05, 2011 11:52 pm

Perhaps I need to vent some steam......so thanks in advance for reading.

My doctors have known all along that I am not in a position to take months off my p/t work for a transplant, nor do I have the support needed for the bed-ridden 'house-arrest, as it's sardonically called . But I did agree to harvesting and storing them in case my situation were to change in the future.
Two weeks ago my UCSF onc advised me that the time had come to prepare for harvesting my stem cells before the Revlimid makes it harder.
I spent a lot of time researching cheap hotels near UCSF since I live too far to commute for 5 days, even making arrangements to free up the assigned week in June with my part-time work.
Today, after my second attempt to reach their stem cell transplant coordinator, I finally received a rude, very rushed phone call from her indicating that she had researched the stem cell storage issue with Medicare, and they won't cover it unless the harvesting is immediately followed by transplantation!!!!
So unless I have 40K to spare, I need to decide to forgo the harvesting or go with the transplant. This was totally unexpected and a huge shock, but she barely left me time to respond, so cold and uninterested in patient relations, apparently.

After recovering from the bad news I decided to put out this post to find out if others have come up against this insurance problem.
The good news is that I've been responding well to targeted treatment, and maybe I'll never need that very expensive transplant ever ?
I'm 59 and was dx'd with IgG Kappa light chain 12 mos ago, but not treated until 6 mos ago.
My bone marrow biopsy now shows 5% plasma...down from 35% 11 mos ago...which means the Velcade, Dex and Rev have been working well, tho my Kappa light chains are still slightly elevated at 600 ....down from 1500mg/L 9 mos ago.

I feel like telling my onc to just treat me with ongoing targeted chemo as long as my numbers respond.
I am VERY fatigued (sleep all weekend) and I suspect the Rev, since it came on after that was added to the regimin 3 mos ago. But even a transplant can't guarantee a fatigue-free remission of more than 18 mos or so, I believe.

Any thoughts or related experiences will be much appreciated, as you can guess...this can be a lonely journey, with admin difficulties just adding to the hair-pulling

Thanks to you all.

[Christa's Mom]

Re: MEDICARE won't cover stem cell storage

by Christa's Mom on Fri May 06, 2011 10:18 am

Hi Monica,

Yes, we've come across the same thing. The transplant center EJ is going to will only collect enough stem cells for one transplant. They do not collect and store. Although they said it was because the don't like to use "old cells" and would re-collect if a second transplant was needed. We suspect that storage costs were the driving factor behind this approach. Eventually they explained to us that his stem cells would never be exposed to melphalan so we were okay with it. But it was like pulling teeth to get this out of them!

Lyn

[genk]

Re: MEDICARE won't cover stem cell storage

by genk on Fri Oct 14, 2011 3:51 pm

Christas Mom I went to the Hillman Cancer Center in Pittsburgh a month ago to see if I was a candidate for transplant. The doctor I saw told me he used stem cell that was 17 years old and it worked fine. Don't know why they told you that? Probably the storage fees.

[texas-tea13]

Re: MEDICARE won't cover stem cell storage

by texas-tea13 on Sun Nov 13, 2011 1:09 am

When my stem cells were collected for ASCT there was enough left over for another transplant when needed. They are stored at UMC in Tucson, AZ since April 2010. Great Transplant Unit there! My Doctor said they can be frozen forever. My 3 weeks in an apartment with my sister wasn't so bad. The only probem i had in the three weeks was a weak stomach and once i had medication for that i was fine. I was even allowed to go out and eat at night when restaurants were not busy. My Doctor told us to sit off in a corner by ourselves. Gave me something to look forward to each night.

[David]

Re: MEDICARE won't cover stem cell storage

by David on Fri May 25, 2012 7:25 pm

Back to the topic of Medicare not covering the storage of stem cells, I was also told this by the Moffitt Cancer Center in Tampa. This implies that Moffitt charges for stem cell storage. Do all Cancer Centers charge for storage or only some of them? I have read of many people who have stem cells in storage, but no one has ever said anything about the cost.

[Christa's Mom]

Re: MEDICARE won't cover stem cell storage

by Christa's Mom on Thu May 31, 2012 5:45 pm

I suspect that all centers or hospitals "charge" as they have costs associated with maintaining stem cells, and that the issue is what insurance companies are willing to pay. To add another layer to the discussion -- EJ was told that they needed to collect 5 million stem cells. If they collected 5 million that's all they would collect, they would not try to collect enough for two SCTs. But, if they collected more than they needed, they told us they would store the extra. EJ collected just enough, so this never got to be an issue, but I guess there are ways around the insurance co's!

Lyn

[Grace]

Re: MEDICARE won't cover stem cell storage

by Grace on Fri Aug 31, 2012 11:12 pm

My husband was diagnosed with Multiple Myloma in December 2007. After being worked up and starting treatment they decided he needed a Stem Cell Transplant. We were referred to Moffitt Hospital in Tampa where we live. My husband decided on a self donated transplant. They were able to collect enough stem cells for2 transplants. We were told they would store the unuse cells for 5 years with no charge. After 5 years we will be notified how much it will cst for storage but were told they could be stored for an indefinite amount of time. We have never received a bill from Moffitt. We will probably be notified soon as to how much storage will be. God Bless all of you in this situation. We have made it down our long road and my husband is doing fairly well except for pain. Good Luck to all.

[David]

Re: MEDICARE won't cover stem cell storage

by David on Sat Sep 01, 2012 8:03 pm

To Grace regarding storage costs at Moffitt Cancer Center, Tampa: I just had an ASCT in mid July at Moffitt and learned about storage costs on the day they collected my cells. The sheet I signed (they gave me a copy) says free storage for 5 years and after that Moffitt will make a reasonable effort to contact you and you have 30 days to respond, and "At the present time, hematopoietic stem cell storage costs are $400/year." They suggest you contact your insurance company or Medicare regarding what help they might provideduring the 30 days. I would ask for a discount if the $400 is too steep for your budget.

[Dan in Phoenix]

Re: MEDICARE won't cover stem cell storage

by Dan in Phoenix on Fri May 31, 2013 11:59 am

I might be able to share some light on this situation.

I was diagnosed in 1987 with systemic amyloidosis and treated at MD Anderson by Dr. Barlogie. Back then they didn't do peripheral stem cells so I had the old fashioned BM harvest from the hip and stored at no charge. Then they started doing PBSCs so I had 10 million cells frozen and stored at Little Rock at no charge. This is enough for about 3 transplants if I ever need them which so far I have not. I had been in remission for 25 years thanks to Dr. Barlogie's treatment without a transplant just smart medicine and good science.

However it came back last year in my kidneys and heart. When I got back in remission we collected another 8 million PBSCs since my original cells were now 25 years old and the oldest SCs used were about 17 years old. I may be one of the original collectors of PBSCs for myeloma and my contemporaries were probably used by now. I have 18 million SCs frozen just in case and have never been charged. Dr. Barlogie always seems to be planning ahead and covering all options since we don't know what the future will bring. I'm hoping my new remission will be for another 25 years, especially since we have a whole set of new drugs that were not available back in 1987 when I was treated.

Concerning the fact that Medicare wouldn't cover the stem cell storage my insurance origanially would approve a collect andstore so the doctors said they were planning to do an immediate transplant and then just changed their minds and continued on treatments since I'm doing so well. This might be a way to get around the issue if your doctors are willing to work with you.

All my best you you and everyone,

Dan