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Crohn's Disease Forum » Support Forum » Vent Away » Stem Cell transplant denied and needing advice


04-19-2012, 11:36 AM   #1
raechel
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Stem Cell transplant denied and needing advice

Ok... so here it goes...

I have qualified for a stem cell transplant at NW in Chicago, but now I can't get it because of insurance. The initial request for pre-certification was submitted to Aetna in December 2011. That request was denied citing that stem cell transplantation for Crohn's disease is deemed experimental/investigational and therefore not covered by my plan. We of course submitted an appeal with a ton of information on everything medication wise that I have tried and copies of my latest tests etc. to try to prove why an exception should be made in my case. Well, that too was denied.
According to everyone I talked to Aetna "wanted to approve it" but because the specific plan my dad's employer chose there wasn't enough wiggle room to get it approved unless the employer them self agreed to make an exception. As a term of the final level appeal I was able to contact the employer directly and plead my case to them. I explained that every FDA approved treatment option available to me had been exhausted and that I am getting sicker by the day and I really really need this transplant to be approved or in the opinion of my doctors I could die.
The employer responded yesterday to my pleas and gave me the final appeal decision that they "regret to inform me it has been denied"!!!! What really pisses me off is that in addition to citing the same ole "it is experimental" bit they had said all along, they also added a new reason for denial. They said that they agree the transplant may eventually be the best course of action for me but not until " I had exhausted all other available options". They then went on to list three suggestions from their allergy doc (WTF couldn't even get a gastro to review my case?!?). These were his suggestions and the issue I take with each:

1) long term oral steroid use- Ummmm HELLO!!! I have been on steroids more often than not for the last 5 years and am currently on steroids as well and they are NOT helping. I think this suggestion was just purely a mistake and they somehow looked at a medication list from 1 out of 100 doc visits where I had been taken off of steroids due to abcesses.

2) Tysabri- This is the only suggestion that has any validity to it. It is the only FDA approved treatment I know of that I have not tried. My issue with this suggestion is the reason I have not tried it is because my doctors don't want me to. In the opinion of my specialist (you know the person actually specializing in GI, that I have seen for 5 years) Tysabri is not an option for me due to my past medical history and the chance for PML. I have had 3 different doctors refuse to write me for this med. and I think that is a big red flag that I should not be on it!

3) Hyberbaric oxygen therapy- First of all I have seen no evidence of this being any more effective for Crohn's than the transplant. Second, it is not FDA approved either. Third, I called Aetna and they said it too is experimental for Crohn's and would NOT be covered for me! How can they use something they are unwilling to approve against me? I would try it in a heartbeat if they would pay for it.

So here I am now, feeling out of options. I have recieved the final appeal denial and don't know what to do. Had Aetna or my dad's employer eluded to their concerns regarding other treatment options in either of their first 2 denial I could have explained to them why each of their suggestions would not work and possibly proved my case that this IS my LAST available option. Of course I kind of think they purposely did it this way so they could deny. Oh and I left out the paragraph where the taunt me by saying they do not have the ultimate last decision in my healthcare, because it is between me and my doctor what treatment route I take, however they are unwilling to pay for it. Oh, OKAY Aetna, let me just pull 125k out of the air. Get real!

Well now that I feel I have got all of that off my chest I am hoping something constructive other than just the relief of venting will come from this post. Does anyone out there have any suggestions for me in what to do now? I have contacted an attorney and am waiting to hear back but I'm guessing since the appeal process is over with they won't be able to help anyways. Any advice greatly appreciated.

Raechel
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
04-19-2012, 12:08 PM   #2
chrisnsteph1022
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I'm so sorry you're dealing with this. I had to fight to get insurance to cover Remicade. I can't imagine trying to get a SCT. Have you tried Cimzia?
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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04-19-2012, 01:14 PM   #3
raechel
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I'm so sorry you're dealing with this. I had to fight to get insurance to cover Remicade. I can't imagine trying to get a SCT. Have you tried Cimzia?

Thanks for your reply... insurance is SO frustrating! Yes I have been on Cimzia. I was even on a double dose for awhile also with no success. :-(
04-21-2012, 12:37 PM   #4
Jennifer
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A lawyer is a good idea. You can start the whole process over with them even with the appeal time being up. Lawyers have a nack for speeding things up cause no one wants to deal with them.

We're talking about possible death here are we not? I'm curious, how are you going to die if you don't get stem cell treatment? Wouldn't you have surgery before you chanced your own death? How is surgery not an option?
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-21-2012, 05:30 PM   #5
raechel
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A lawyer is a good idea. You can start the whole process over with them even with the appeal time being up. Lawyers have a nack for speeding things up cause no one wants to deal with them.

We're talking about possible death here are we not? I'm curious, how are you going to die if you don't get stem cell treatment? Wouldn't you have surgery before you chanced your own death? How is surgery not an option?
Yes, I would have surgery. Surgery after surgery, after surgery likely. In the past after having surgery within 3 months I have been back to the nearly the same place as before the surgery though so I don't see it as any kind of long term solution. The " I could die" is being a bit dramatic in some ways I suppose. I don't mean I may not die in the very near future without it, just that without finding an effective treatment it will eventually lead to repeated hospitalizations and then I may die. Surgery is just a band aide. To quote my doctors letter to the insurance, " Without cessation of this disease, Raechel is at high risk of not just death, but a slow and painful decline in her health with repeated hospitalizations."
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