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Stem Cell Transplant Update


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#1 peanut

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Posted 19 January 2008 - 06:12 AM

Hi friends,
Sorry I haven’t written. I thought I was retired, or on Federal Disability, but it seems I’ve traded my old full-time job to be my own case manager. I knew my first health insurance rejected my petition for a stem cell transplant but I was told to expect my husband’s insurance to approve. To my utter shock I was denied.

I was sitting in my lung doctor's office. She had just got done telling me I was getting worse and my current chemo isn’t really helping. She left to arrange a chest x-ray when my phone rang with the bad news. My hubby’s insurance rejected my claim because it’s experimental. I sobbed and sobbed in the office and the whole drive home. I made several hysterical phone calls on the drive home one to several important people in my company (the pres of the co) in hopes they might help me overturn my company’s decision. The pres emailed me – “making some progress here and have a plan.” Good sign.

The next day I met with the director of benefits with my husband's health insurance. I asked her why. She told me “experimental, blah.. blah.. we have to be fair… blah, blah.” She is part of committee that makes decisions on questionable medical issues. I asked if anyone on the committee has a medical background. She told me they are all “business professionals” and if they have any medical questions they ask the insurance company. This makes me wonder - if they make assumptions, which are not true how do they know? Dumb. Well, she told me the type of info they needed.

Now I’m in major appeal mode ever since. Non-stop phone calls, writing emails, writing letters, and major over-load. With all the effort being put out the ladies at Northwestern Hospital and I, I am quite optimistic about a reversal. After this I think I need a vacation.

Good news is once I get the monies I can be booked for the procedure in 2-4 weeks. Sounds good, better than a month.

Please send good wishes as I need all the help I can get.
Take care,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 Peggy

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Posted 19 January 2008 - 01:25 PM

So sorry to hear your news. But it sounds like you have a plan of action and plan on fighting it and good for you. I will keep sending good thoughts your way and hope that it goes through. My doctor took me off the chemo 4 weeks ago and is now petitioning the insurance to get Retuxan approved. I hope it goes through as I don't know what else she will do if that doesn't work.

Good luck and keep on fighting.

Warm hugs from Minnesota.

Peggy

#3 bmw

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Posted 19 January 2008 - 01:34 PM

Thinking of you peanut -- Hope all turns out well, insurance can be sooooo frustrating
BMW

#4 Cheri

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Posted 19 January 2008 - 03:08 PM

I'm sorry to hear what you're going through, Peanut. You always seem so upbeat and helpful, I didn't realize you were going through what you are. It sounds like you're doing everything you can to overturn the decision. I will keep you in my thoughts.

Cheri

#5 Margaret

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Posted 19 January 2008 - 04:01 PM

Oh, Peanut....I am so sorry to hear this. I will keep you in my thoughts tonight.

Take care, Everyone.
Margaret

#6 danceswithcats

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Posted 19 January 2008 - 04:45 PM

Not good news, Peanut! I'm so sorry to hear! Oh, them 'business professionals'! in other words, Bean Counters!!

Took 2 years for Dr. Ahearn to fight for my insurance company to pay for the Tracleer but now I get that every month (and the stuff costs $4,000 for every 30 day supply!!!!) so ... don't give up hope!

You're in my thoughts! You're such a delightful, wonderful person and this stress on you is so unfair ... let's hope for a quick, positive resolution!

Soft hugs!!!

#7 peanut

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Posted 19 January 2008 - 04:46 PM

Thank you everyone...
Yes, we all have something going - big or small - it's what we do with it that counts. I've decided to be optimistic and hope for the transplant in the spring cause I'd rock the baldy head especially with the cute, pink, paisley, scarf I bought... (baldy from the high dose chemo that comes with stem cell transplant) and then my hair grows back curly. Cool. I'm due for a change.

curly peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 emmie

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Posted 19 January 2008 - 05:50 PM

curly peanut,

You will rock as a baldy and as a curly girl. I, too, am sick and tired of insurance companies and their "medical" consultants determining the treatment we receive. I am in the same boat for a different treatment for one of the other diseases I have.

The work it takes to appeal is horrendous. Please be sure not to let it overwhelm you. I agree that what we do with our "stuff" is actually more important than the "stuff". You are a great example of that.

I am sorry and disappointed for you. Keep up the fight--at a reasonable pace. I'll be thinking of you lots with positive and comforting thoughts.

xoxo emmie

#9 barefut

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Posted 19 January 2008 - 06:11 PM

Oh
peanut,

I am so sorry you are having to deal with all that.....stuff.
Quite frustrating - to say the least - especially when you aren't feeling good in the first place.

I admire your perseverance and humor in the face of all the adversity. I'll bet you will look cute in your little pink scarf!

Stay optimistic. Keeping you in my thoughts!

Love you!
Barefut

#10 epasen

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Posted 19 January 2008 - 11:14 PM

Peanut,
I'm sending some good thoughts to your way!
Warm hugs,
Emmi

#11 Gidget

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Posted 20 January 2008 - 08:25 AM

Peanut,
What insurance company do you have? I have Blue Cross Blue Shield and was denied the STC because it was experimental. I never got to argue if the STC was a medical necessity as since it was deemed "experimental", I was stopped in any more discussion. And yes, I appealed and appealed. Northwestern did a good job supporting the appeals but as I said with it being deemed experimental, it did not matter if there was a medical necessity or not.

And yes, I contacted my states attorney general office in hopes that he might be able to force BCBS to cover it. Unfortunately, my company's plan is "self funded" which is like almost all corporate medical plans. And as such a "self funded" plan runs outside the state's insurance laws. Meaning that they can cover what they want and not cover what they don't want.

And yes, I did contact my state's local health advocate who was sympathetic but could do nothing for me. And yes, I did contact my state senator.

And yes, I did talk to my company to see if they would cover it. But unfortunately, I did not get very far.

So, to make a long story short -- I do not have any answers. My strategy now is to try to get on Social Security Disabilty as Medicare DOES cover SCT. It is sad, as I have been waiting for over a year to get a hearing even though Sclero is one of the 5 diseases approved by Social Security.

It is frustrating as this could all have been avoided if my Human Resource dept was more on the ball. Unfortunately, they were more interested in keeping premiums down than in looking at what is covered and what is not. So, because of their inexperience, I have to pay. They didn't even know that experimental is excluded.

I wish you good luck in your efforts. I hope you will have more success than I did. I hope that you do not have to pay for the procedure out of pocket and I hope that the insurance companies will change their practices to include experimental WHEN DEEMED A MEDICAL NECESSITY. This way, we can at least make an argument for the treatment as lets face it. Every treatment with scleroderma is "experimental". Good Luck Gidget

#12 peanut

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Posted 20 January 2008 - 11:09 AM

Hey Gidget,
You make my point exactly. My hope relies in a treatment labeled experimental not because it’s new, but because the disease is rare and it is difficult to find eligible patients.

I'm so so sorry things have not worked out for you. You could try fund raising?

I have 2 health insurances: United & Oxford Life/BSBC of AZ. I was told that United would likely cover it but I got denied. They also told me United's plans and groups vary by state, region, company, etc. So basically I can't have any expectations.

Right now, I placed my hope in some important people who are advocating for my coverage. He wrote me: "Nothing we cant deal with and I think we have a plan to help. Will get back to you in the next day or so." His email gives me hope with no expectations.

I have the rare aggressive form of Scleroderma, so I don't have any other options but to be aggressive. I'm not even supposed to be in the trial because my lungs are too far gone, but they're making an exception. So, I don't have the time to wait. I'm on cyclophosphamide now, which is pretty, much the most aggressive form of non-experimental treatment available. I just finished my fifth treatment and early test results show my diffusion rate continues to drop. It isn't working.

peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#13 Snowbird

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Posted 20 January 2008 - 11:42 AM

Well Peanut...you are certainly in my thoughts as well! You are so strong and determined....don't ever change! I hope that plan comes through for you and you don't have to wait very long to find out...keep us posted and good luck!
Sending good wishes your way!

#14 janey

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Posted 20 January 2008 - 11:59 AM

Yep - I think we all have traded one job for another. We really need to spend so much time dealing with our health and all the related issues, it's hard to do anything else. I'm glad you have the time because it sure looks like you need it with the fight you are fighting. I'll be keeping fingers and toes crossed that you can work things out. Good for you for not taking NO as an answer. You go girl!!!!

Love the new picture!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#15 Gidget

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Posted 21 January 2008 - 03:01 AM

peanut,
I am very sorry that things are not going smoother but it sounds like it is hopeful. Please let me know how you make out.

When I found out I couldn't get coverage, I took a job with a company that had BCBS of Florida and that Northwestern had said had some success in getting the SCT approved. I was only able to last working 3 days and I had to quit as I just was having too many problems where by mid day I was having difficulty breathing.

I am tracking similar to you but it looks like the cyclophosphamide is holding my lungs. My doctor. said that if the disease flairs again, nothing with stop it -- not the cyclophosphamide or any other drug and I will need a stem cell. So my fingers are crossed and I am trying to figure out what to do next as the Immunosuppressents make me sick with bleeding and sores. So, I am considering the Gleevec trial as supposedly that may treat the actual fibrosis action of scleroderma vs. the immunosuppressents that effect the entire immune system.

Anyway, at the time I was considering having to pay for the SCT "out of pocket", I started looking around at other places where the STC might be less expensive but the quality of care might be just as good. For example, Dr. Ann Traynor at Maine General worked with Dr. Burt for 15 years doing SCT. Maine General hospitalization costs may be less than Northwestern. I'm not sure.

For me the biggest problem with out of pocket wasn't so much the procedure but what was the out of pocket amount going to be. I mean, what if there were complications. Basically, if the insurance will not cover the stem cell, then they will not cover any treatments including complications relating to the stem cell. So, I could never get my arms around if the bill was going to be $150K or $500K.
Now, my only hope is to get on Medicare which has been a slow process as my application has been in for a year now.

It is very frustrating and unfortunately, I keep going back to my Human Resource Folk who didn't even understand what our insurance covered and excluded but just kept signing on the dotted line as long as the premium did not go up. Meanwhile the insurance company kept excluding more and more items. It is sad as if you take all the people with autoimmune diseases, there are just as many as with heart disease. And unfortunately, most things with the autoimmune are "experimental". Which means that most of us with "good" insurance do not have coverage.

Please let us know how you make out as it sounds like you will have much better luck than me and I have no problem following your path to coverage. I can't imagine the emotional pain you are in as I know that when I was denied coverage all I could do was cry and cry. I felt like complete strangers were deciding my fate. I was so angry as the insurance company would not approve the procedure and at the same time would not tell me what my alternatives were. I was soo sad and mad at the same time. I hope you get the coverage that you need. I am thinking only good thoughts for you. Gidget



#16 Sweet

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Posted 21 January 2008 - 04:19 AM

Peanut,

I certainly appreciate you keeping us up to date with the progress of all of this. You do have a full time job keeping on all of this. I admire your perseverance and I LOVE your positive attitude, not to mention your cute new picture!!

Love ya
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#17 Clementine

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Posted 21 January 2008 - 05:06 AM

Peanut,
I am sorry....I bet you are pulling your hair out right
now. I hope this is all cleared up soon.
Love,
Tangelo

#18 barefut

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Posted 21 January 2008 - 11:39 AM

Peanut,

I can't imagine the insurance nightmare you are having to deal with. There is almost nothing more stressful and frustrating. I'm keeping you in my thoughts.

Love,
Barefut

#19 peanut

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Posted 21 January 2008 - 01:33 PM

Thanks Barefut. You're a doll.

Honestly, I'm not under too much emotional turmoil over the whole thing. Maybe I'm over medicated or have faith in a higher power, but I'm very optimistic about the whole situation. I think it's best to stay calm, keep clear headed and not let the situation doesn't get the best of me.

Take care

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#20 GocartMoz

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Posted 21 January 2008 - 04:53 PM

Peanut,

Keep plugging away. I have United Healthcare and I was approved for the SCT. Everyday I am more grateful for what the SCT has done for me. I would be happy to write a letter for you explaining that this isn't experimental in light of the success others have had with the treatment. It seems absolutely absurd that United Healthcare can approve the treatment in one instance and reject it in the next. As a last resort you may want to contact counsel and have them fight UHC on the decision. Maybe in some way my case can be used as precedent for you. I would be happy to testify or do whatever is needed to help. I know that Northwestern is considered by UHC as a preferred transplant center, though I didn't have my transplant there. Don't give up on this. I am confident it will be worth it to you in the end. Please PM me if you would like me to do anything to help. Good luck!

Dave in FL