Funding a stem cell transplant

Hi all--

I have been making slow progress towards a possible stem cell transplant, undergoing salvage chemo right now in the hospital as I write this message.

I received an unexpected phone call yesterday from my "transplant coordinator" that I am in an exclusion period, and my insurance will not pay for the transplant until next summer, when I have been in their plan for 24 months (and dead from cancer too).

Has anyone else run in to this kind of setback? I went through all my insurance paperwork, and I am indeed not covered, so fighting the insurance co. is of no use. They're still paying for my R-ICE treatment that leads up to SCT, which makes it all seem like a really bad cosmic joke.

My next step is to talk with the "financial team"... I guess to get on a payment plan? It's really tough to consider continuing down this path with such worry about overwhelming debt. For lack of better words, it gives me less to continue fighting for.

What would you do? I'm still yet to talk with the financial people, so there may be hope of something to assist me here.. but I know that a allo SCT can run up to 100K. Are there any other options to take place of the stem cell transplant?

-Nathan

Comments

  • po18guy
    po18guy Member Posts: 1,459 Member
    Clinical trial
    I would research clinical trials, as many are open and fall within the "standard of care" that your insurance is already paying for. I was scheduled for a transplant, but the success of the experimental (now approved!) drug that I receive made it unnecessary. You might think about exhausting this possibility before losing any more hope.
  • diazr1
    diazr1 Member Posts: 101
    po18guy said:

    Clinical trial
    I would research clinical trials, as many are open and fall within the "standard of care" that your insurance is already paying for. I was scheduled for a transplant, but the success of the experimental (now approved!) drug that I receive made it unnecessary. You might think about exhausting this possibility before losing any more hope.

    i say clinical trial . after
    i say clinical trial . after all i have been through I think they push the SCT when not needed .
  • jimwins
    jimwins Member Posts: 2,107
    Hi Nathan
    Hi Nathan ☺,

    I read your post earlier and I was steaming mad - well "pi$$ed off".
    I decided to wait until my blood reduced to a
    simmer before I responded. The clinical trials suggestion
    is probably a good one to look into. You might also check
    with the Leukemia and Lymphoma Society and the social workers
    at your facility as well. They might offer some guidance.

    Leukemia & Lymphoma Society

    I will send you a personal email a little later.

    Hugs,

    Jim
  • KatMat
    KatMat Member Posts: 62
    jimwins said:

    Hi Nathan
    Hi Nathan ☺,

    I read your post earlier and I was steaming mad - well "pi$$ed off".
    I decided to wait until my blood reduced to a
    simmer before I responded. The clinical trials suggestion
    is probably a good one to look into. You might also check
    with the Leukemia and Lymphoma Society and the social workers
    at your facility as well. They might offer some guidance.

    Leukemia & Lymphoma Society

    I will send you a personal email a little later.

    Hugs,

    Jim

    Hi Nathan
    I would ask your doctor if they can fight your case with the insurance oompany. That is utterly ridiculous they won't cover it until the summer. Is there a social worker at the facility you are going to? Maybe they can help too.

    I hope someone can get your insurance to change their mind. I'm with Jim, steaming mad!

    Good luck! I hope your R-ICE is going well for you.

    Katie
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    diazr1 said:

    i say clinical trial . after
    i say clinical trial . after all i have been through I think they push the SCT when not needed .

    Second-Line
    I agree with what diazr1 says here.

    If I were to ever need a second line therapy, I would prefer any reasonable option to SCT. I credit doctors with a lot of integrity, but it seems to me that some have gravitated into the "SCT business."
  • vinny59
    vinny59 Member Posts: 1,032
    dam
    Hey Nathan, that really sucks, I would think that your doctor would be able to step up for you and challenge the insurance company. I know this is not the same, but my doctor has to fight just to get a follow up PET scan. I had no classic symptoms with my stage 4 lymphoma. so this is the only way I have of seeing evidence of disease. Vinny
  • Financial counseling..
    Thanks all for the good feedback :)

    I've had a second opinion too, and both docs say the SCT is the way to go. There are some complicating factors that keep me from some clinical trials.

    I've been in touch with the hospital's financial counselor, and it seems that I could possibly get some charity care or something. I'm not sure if I will qualify because I have saved money for an emergency, but I guess if I have to spend that to continue living, I guess I will do so. However, it's nowhere near the amount required for a stem cell transplant-- more like a water heater repair.

    Everyone seems to say this is going to happen one way or another, so I'm just going to watch it unfold. It looks like I'm going to get out of the hospital today after the long R-ICE treatment, so nothing's going to ruin my day (I hope!)

    -Nathan
  • onlytoday
    onlytoday Member Posts: 609 Member
    SCT

    Nathan,

     

    So I'm wondering why your Doctor didn't get a pre-approval for the SCT???  What the heck???  Before I have a PET, CAT, or Chemo my doc gets a pre- approval- I don't know why that wouldn't be routinely done.  And in the event that you need it and it isn't pre- approved then I would say that your doctor's office should be fighting for you!  Am I misunderstanding something?   I really think the ball is in their court- not yours.  Boy am I mad like Jim.  Now it may be that they tried and that's how you found out that it's not approved and maybe you still need the procedure.  If that turns out to be it then I would suggest going for as much charity care as you can get, beg for a discount and then recruit friends and family for a fundraiser. I'm so sorry you are going thru this.

     

    You have quite enough to handle without this.   Good luck and God Bless.

  • onlytoday said:

    SCT

    Nathan,

     

    So I'm wondering why your Doctor didn't get a pre-approval for the SCT???  What the heck???  Before I have a PET, CAT, or Chemo my doc gets a pre- approval- I don't know why that wouldn't be routinely done.  And in the event that you need it and it isn't pre- approved then I would say that your doctor's office should be fighting for you!  Am I misunderstanding something?   I really think the ball is in their court- not yours.  Boy am I mad like Jim.  Now it may be that they tried and that's how you found out that it's not approved and maybe you still need the procedure.  If that turns out to be it then I would suggest going for as much charity care as you can get, beg for a discount and then recruit friends and family for a fundraiser. I'm so sorry you are going thru this.

     

    You have quite enough to handle without this.   Good luck and God Bless.

    It's a go-- they'll do it for me

    onlytoday,

     

    Yeah, I was caught off-guard, because I was considering the R-ICE chemo to be a part of the stem cell transplant, instead it it just a separate salvage chemo. However, the best and most wonderful news did come in the other day, as I am elegible for charity care and they will fund the transplant 100% despite the insurance coverage gap! I am so glad that I chose to stay faithful to my original hospital. They had a great team of people there, I submitted some paperwork about my finances and they did the rest for me! Another office has been working on free funds for the Neulasta (Neupogen?) for mobilization.

    Now that all is in the clear and clear.. and I had a PET scan with modest results, I'm going to have one more R-ICE, then get in the thick of it with the STC. Confusing times!

     

  • vinny59
    vinny59 Member Posts: 1,032
    unknown said:

    It's a go-- they'll do it for me

    onlytoday,

     

    Yeah, I was caught off-guard, because I was considering the R-ICE chemo to be a part of the stem cell transplant, instead it it just a separate salvage chemo. However, the best and most wonderful news did come in the other day, as I am elegible for charity care and they will fund the transplant 100% despite the insurance coverage gap! I am so glad that I chose to stay faithful to my original hospital. They had a great team of people there, I submitted some paperwork about my finances and they did the rest for me! Another office has been working on free funds for the Neulasta (Neupogen?) for mobilization.

    Now that all is in the clear and clear.. and I had a PET scan with modest results, I'm going to have one more R-ICE, then get in the thick of it with the STC. Confusing times!

     

    good to hear

    awesome news!!! stay strong .... Vinny

  • anliperez915
    anliperez915 Member Posts: 770
    unknown said:

    It's a go-- they'll do it for me

    onlytoday,

     

    Yeah, I was caught off-guard, because I was considering the R-ICE chemo to be a part of the stem cell transplant, instead it it just a separate salvage chemo. However, the best and most wonderful news did come in the other day, as I am elegible for charity care and they will fund the transplant 100% despite the insurance coverage gap! I am so glad that I chose to stay faithful to my original hospital. They had a great team of people there, I submitted some paperwork about my finances and they did the rest for me! Another office has been working on free funds for the Neulasta (Neupogen?) for mobilization.

    Now that all is in the clear and clear.. and I had a PET scan with modest results, I'm going to have one more R-ICE, then get in the thick of it with the STC. Confusing times!

     

    Awesome News!

    Awesome News Nathan! Hope everything goes well for you...sending you positive thoughts! Will be keeping you in my prayers!

    Sincerely,

    Liz

  • KatMat
    KatMat Member Posts: 62

    Awesome News!

    Awesome News Nathan! Hope everything goes well for you...sending you positive thoughts! Will be keeping you in my prayers!

    Sincerely,

    Liz

    Great news~!

    Happy to hear your news Nathan!  Good luck with everything.

  • KatMat
    KatMat Member Posts: 62

    Awesome News!

    Awesome News Nathan! Hope everything goes well for you...sending you positive thoughts! Will be keeping you in my prayers!

    Sincerely,

    Liz

    Great news~!

    Happy to hear your news Nathan!  Good luck with everything.

  • jimwins
    jimwins Member Posts: 2,107
    unknown said:

    It's a go-- they'll do it for me

    onlytoday,

     

    Yeah, I was caught off-guard, because I was considering the R-ICE chemo to be a part of the stem cell transplant, instead it it just a separate salvage chemo. However, the best and most wonderful news did come in the other day, as I am elegible for charity care and they will fund the transplant 100% despite the insurance coverage gap! I am so glad that I chose to stay faithful to my original hospital. They had a great team of people there, I submitted some paperwork about my finances and they did the rest for me! Another office has been working on free funds for the Neulasta (Neupogen?) for mobilization.

    Now that all is in the clear and clear.. and I had a PET scan with modest results, I'm going to have one more R-ICE, then get in the thick of it with the STC. Confusing times!

     

    Great news !

    That is such great news, Nathan!  Good luck with everthing and please keep us posted and chat here anytime you like. 

    You know we're here!

    Big hugs,

    Jim