Bad BlueChoice

We have decided to go to Chicago despite the lack in insurance approval.  We are paying for the evaluation out of pocket.  The cost of the evaluation (without the MRI or spinal tap) is $2,100.  As of today, friends and family have donated $5,850 through our fundraising page!!!  Amazing!

I just found out from my nurse at NorthWestern, they don't accept any insurance from BlueChoice.  So I will have to switch to a new plan if I want to have HSCT.

Insurance: it SUCKS and I'm also glad I have it!

Our insurance is giving us the run around.  Our primary care Dr. wrote the referral but mistakingly put Johns Hopkins as the hospital, not Northwestern.  So the referral was incorrect, easy fix, right?  WRONG!!!

Our insurance doesn't cover out of network Dr's.  Dr. Burt is out of state, therefore out of network.  

There is a clause in my handbook that says if no Dr. in your area can offer you this service, then the visit will be covered.

Long story short, after spending several hours on the phone with all Dr's offices and the Insurance company, we have no referral, and it isn't likely we will.

My PCP's office is filling out the necessary paperwork to see about pre-authorization, but that could take up to 30 days. 

Now I'm looking at changing insurance to a PPO so I can go anywhere in the nation.  

Man oh man, why can't this be simple?

Chicago Bound

We are headed to Chicago in 2 weeks for  my evaluation with Dr. Burt.  He is the doctor offering the possibility of a cure by a stem cell transplant.  They are currently in Phase 2 of the clinical trials and they have had great success with CIDP patients.

As we head into this trip, I'm nervous, I'm scared, I'm anxious, I'm hopeful.  The possibility of being free from this disease that currently controls our lives makes me want to jump!  (Which is not easy for me).

The parts that scare me?  What if he says I don't qualify?  What if he says I do?  What effect will this all have on my family?  The boys?  What will this do to my body?  Will we be able to have more children?  Should we?  Should we sell our house to lessen expenses?  Should we stay so the boys are in a familiar place?  So many questions, so little answers.

Anticipating getting the biggest question answered in 2 weeks, am I in or not.  Then we can start to make plans towards getting the HSCT or going on with this craziness we are currently doing.


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-History-

Rachelle was diagnosed with CIDP in the Winter of 2011. She utilized many different treatments to try and stop the auto-immune attacks (IVIG, Steroids, then IVIG with lots of pre & post medications). While several of these approaches worked well for some period of time, it has become clear that her disease is still active and progressing.

The most effective form of treatment Rachelle tried to date, was a powerful immune modifier called IVIG. Since this approach to suppressing her immune system worked well for a period of time, we researched other similar treatments.

(http://www.gbs-cidp.org/cidp/all-about-cidp/)

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-Treatment Goal-

Reset Rachelle's immune system so that it no longer attacks the myelin sheath protecting her nerves. If successful, we hope for a long-term remission that will stop this disease. 

A secondary goal is for improvement of Rachelle's current symptoms. Once the auto-immune process is stopped, her body will have the ability to partially repair the scarring in her legs, feet & hands. While many patients experience some degree of improvement, it is impossible to predict Rachelle's results.

Of course, improvements would be awesome but most important is to stop progression.

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-The Procedure-

It's called hematopoietic stem-cell transplantation (HSCT). The words "stem-cell" and "transplant" are a bit misleading. This is not the type of regenerative treatment that we all read about in the news nor is Rachelle getting cells from a donor.

The positive results from this treatment are produced by using chemotherapy to very strongly suppress Rachelle's immune system. The objective is to kill the components of Rachelle's immune system that have the "memory" to target her myelin. By erasing this "immune memory" the hope is to essentially stop the auto-immune disease process.

Once the immune system is suppressed with chemo, Rachelle will get a transfusion of her own stem-cells which help facilitate the healing of her immune system. These stem-cells are collected prior to the chemo and stored until she is ready for the infusion. Hence, the name "hematopoietic stem-cell transplantation" which means "getting a transplant of your own stem-cells".

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