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SCT - Allo
How can my husband and I get AETNA to pay for an Allo SCT? They say it's experimental and won't pay for it. What advise can anyone give me?
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PattiRose
Re: SCT - Allo
PattiRose - Where are you hoping to have his Allo done? Is it being done as part of a clinical trial? I've had meds denied by my insurance co. in the past because they were "experimental." The only way I've gotten them to pay is by working closely with the benefits folks at the docs office. Are you working with your onc's benefits folks? What are they saying?
Lyn
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: SCT - Allo
PattiRose-
We are in the same boat. Due to the fact that my husband has only barely achieved partial remission after eight cycles of Velcade, Revlimid and Dex, and has all the "bad" chromosome markers, our doctors feel that an allo is the only option. It is a clinical trial to do the allo, so there still is a chance that our insurance won't cover it. However, the head of the department feels confident that our insurance will eventually cave.
Talk with your transplant team. The head of the department ought to work with Aetna one on one. Because an allo is so much more expensive than an auto, the insurance company will fight every step of the way. Because it is likely a clinical trial, again, Aetna won't want to pay.
This is something that you need your doctors on your side and working with Aetna. If an allo truly is the only option, then your doctors need to hammer that fact over and over. You should have a case worker with your hospital who is on this too. You can't fight Aetna yourself, you need the hospital doing this for you.
Good luck, keep us posted.
Jenn
We are in the same boat. Due to the fact that my husband has only barely achieved partial remission after eight cycles of Velcade, Revlimid and Dex, and has all the "bad" chromosome markers, our doctors feel that an allo is the only option. It is a clinical trial to do the allo, so there still is a chance that our insurance won't cover it. However, the head of the department feels confident that our insurance will eventually cave.
Talk with your transplant team. The head of the department ought to work with Aetna one on one. Because an allo is so much more expensive than an auto, the insurance company will fight every step of the way. Because it is likely a clinical trial, again, Aetna won't want to pay.
This is something that you need your doctors on your side and working with Aetna. If an allo truly is the only option, then your doctors need to hammer that fact over and over. You should have a case worker with your hospital who is on this too. You can't fight Aetna yourself, you need the hospital doing this for you.
Good luck, keep us posted.
Jenn
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: SCT - Allo
We are hopeing to have the allo done at the Univ. of VA. They just restarted their transplant program last fall. I work for UVA and it would be extra nice to have him here. There is a hospital across town that does them, that's where he had his auto. We don't want to go back there for several reasons.
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PattiRose
Re: SCT - Allo
Hi Pattirose,
If UVA doesn't pan out, try Johns Hopkins in Baltimore. They were able to persuade my insurance company to pay for my allo by attaching it to a clinical trial. Because I was technically in remission at the time (having just completed an autoSCT--my doctor wanted me to have a tandem auto-allo), it was tricky to convince the ins. co. that the procedure was truly necessary. Anyway, JH does a LOT of transplants and they are a top-notch facility with low TRM. Just a suggestion since I meet patients there from all over the east coast. Best of luck, Dana
If UVA doesn't pan out, try Johns Hopkins in Baltimore. They were able to persuade my insurance company to pay for my allo by attaching it to a clinical trial. Because I was technically in remission at the time (having just completed an autoSCT--my doctor wanted me to have a tandem auto-allo), it was tricky to convince the ins. co. that the procedure was truly necessary. Anyway, JH does a LOT of transplants and they are a top-notch facility with low TRM. Just a suggestion since I meet patients there from all over the east coast. Best of luck, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: SCT - Allo
Dear Pattirose,
Since allogeneic stem cell transplant is still considered investigational (i.e. the role of this procedure in myeloma is a moving target and still being defined), there are insurance companies that will turn it down outside of the context of a clinical trial, but will cover it if it is part of a study. I would look into that. If they will cover it in the context of a clinical trial, there are several institutions around the country that have active studies for allogeneic stem cell transplant for myeloma. Near me, Duke University is one of them. You might also want to look at Johns Hopkins or VCU.
Best of luck!
Pete V.
Since allogeneic stem cell transplant is still considered investigational (i.e. the role of this procedure in myeloma is a moving target and still being defined), there are insurance companies that will turn it down outside of the context of a clinical trial, but will cover it if it is part of a study. I would look into that. If they will cover it in the context of a clinical trial, there are several institutions around the country that have active studies for allogeneic stem cell transplant for myeloma. Near me, Duke University is one of them. You might also want to look at Johns Hopkins or VCU.
Best of luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: SCT - Allo
Dana,
Glad to see you posting again. How are things going? Things are pretty much back to normal for me. I am not having any problem with GVHD at this point. My one year post transplant tests show me in remission. I also got the great news that my Donor would like to contact me. It takes such a special person to go on the Be The Match Registry and donate to a total stranger. Usually the patient has to write a letter first. It is not going to be easy to put into words what a wonderful thing she did for me.
Markt
Glad to see you posting again. How are things going? Things are pretty much back to normal for me. I am not having any problem with GVHD at this point. My one year post transplant tests show me in remission. I also got the great news that my Donor would like to contact me. It takes such a special person to go on the Be The Match Registry and donate to a total stranger. Usually the patient has to write a letter first. It is not going to be easy to put into words what a wonderful thing she did for me.
Markt
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Mark
Re: SCT - Allo
Dear Mark,
I am so, so happy to hear you are doing well! That news just made my day! I, too, am loving a "normal" life again. My minor gvh is diminishing, although I'm not sure I'm happy to see it go, as it made me feel secure in a strange sort of way (as a visible sign that the new immune system was "on the job", I suppose). My gvh symptoms were a tender mouth, watery eyes, and strange, ridged fingernails, which my doctor said she had never seen before. But now the fingernails are smoothing out again, the eyes are much drier, and the oral gvh is almost entirely gone (it was never bad enough to affect my diet in any way). Truthfully, I would have gladly kept the symptoms forever in exchange for this complete remission, because I feel so good. After being on some type of chemotherapy continuously for two years, I was amazed to rediscover what it feels like to have full energy again. I'm assuming that you are not taking any drugs, either? That is truly the beauty of the therapy.
My one-year bm biopsy will be the end of August, so we shall see. My doctor, who is very cautious about throwing around labels, did tell me a couple of months ago that I am truly in CR. In fact, I just handed her a bunch of research this past Monday, thanks to your efforts, about DLIs and MR. It isn't standard practice to test for a molecular remission at JH, so she is checking with the lab to see if they are willing to do it; I guess the lab has some say in all of this!
Thanks for all your wonderful research and help, and especially for being such an encouragement. Blessings, Dana
I am so, so happy to hear you are doing well! That news just made my day! I, too, am loving a "normal" life again. My minor gvh is diminishing, although I'm not sure I'm happy to see it go, as it made me feel secure in a strange sort of way (as a visible sign that the new immune system was "on the job", I suppose). My gvh symptoms were a tender mouth, watery eyes, and strange, ridged fingernails, which my doctor said she had never seen before. But now the fingernails are smoothing out again, the eyes are much drier, and the oral gvh is almost entirely gone (it was never bad enough to affect my diet in any way). Truthfully, I would have gladly kept the symptoms forever in exchange for this complete remission, because I feel so good. After being on some type of chemotherapy continuously for two years, I was amazed to rediscover what it feels like to have full energy again. I'm assuming that you are not taking any drugs, either? That is truly the beauty of the therapy.
My one-year bm biopsy will be the end of August, so we shall see. My doctor, who is very cautious about throwing around labels, did tell me a couple of months ago that I am truly in CR. In fact, I just handed her a bunch of research this past Monday, thanks to your efforts, about DLIs and MR. It isn't standard practice to test for a molecular remission at JH, so she is checking with the lab to see if they are willing to do it; I guess the lab has some say in all of this!
Thanks for all your wonderful research and help, and especially for being such an encouragement. Blessings, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: SCT - Allo
Dana,
I so excited to hear that you are doing so well. That is great that the Donor immune system put you in remission. Proof positive of the graft vs myeloma effect. Since I have had so little problem with GVHD my doctor has reminded me that just because you have so little GVHD that does not mean that the transplant is not working. Part of what makes it a curative procedure is simply that the donor immune system functions like a "normal" persons immune system.
I was diagnosed in late September 2010 and I have not had any myeloma therapy since my Allo in May 2011. I only take voriconazole (anti fungal), acyclovir (anti viral) and Dapsone (prevent lung infection). I know most myeloma patients and doctors "bad mouth" Allo transplants, but I think they are a miracle. Even with the new drugs, the allo is the only potential cure.
Have a great weekend. Hearing how great you are doing has definitely brightened up my day.
Mark
I so excited to hear that you are doing so well. That is great that the Donor immune system put you in remission. Proof positive of the graft vs myeloma effect. Since I have had so little problem with GVHD my doctor has reminded me that just because you have so little GVHD that does not mean that the transplant is not working. Part of what makes it a curative procedure is simply that the donor immune system functions like a "normal" persons immune system.
I was diagnosed in late September 2010 and I have not had any myeloma therapy since my Allo in May 2011. I only take voriconazole (anti fungal), acyclovir (anti viral) and Dapsone (prevent lung infection). I know most myeloma patients and doctors "bad mouth" Allo transplants, but I think they are a miracle. Even with the new drugs, the allo is the only potential cure.
Have a great weekend. Hearing how great you are doing has definitely brightened up my day.
Mark
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Mark
Re: SCT - Allo
It has been over 12 years now since my allogeneic transplant and I am in remission and doing well. I hope to learn from all of you more about current treatments etc since I have been blessed to be out of the medical loop for quite some time.Though my GVH was a major pain, I have been lead to believe that it did contribute to my long term remission. I was fortunate that it did not attack my vital organs (liver, kidneys etc), just my mouth tongue and skin.
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Kathy Pedersen - Name: Kathy
- Who do you know with myeloma?: I am a Myeloma survivor
- When were you/they diagnosed?: 1998
- Age at diagnosis: 39
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