The cost depends …

October 20, 2011 at 7:39 am


If the insurance doesn’t cover the sct, it is expensive. I went through it this past summer and the cost to those without insurance was around $125k (not including out patient hotel/travel – this is only the medical). Even with insurance (mine paid 100%), some of the time is spent as an outpatient and so I did spend around $6,000 while in Chicago (including my airfare).

However, there is free housing and it was offerred to me, so if I hadn’t been able to afford the hotel while being an outpatient, I would have accepted the free housing. I stayed there for my evaluation in May and while it is not nearly as nice as staying where I did, it is clean, has a kitchen and is free! And there is a group that pays for 2 nights at a good hotel when going for initial evaluation … so my evaluations (had to go twice) didn’t cost me much outside my plane tickets. I know I am one of the fortunate ones whose insurance paid without any hassle but, who knows? You also might be covered by your insurance?

There were nine that received their sct the same week I did. The 3 with CIDP all had insurance pay … the 4 with MS had 2 that insurance paid and 2 that were self pay. Both of the patients with Lupus and Crohn’s had their sct paid by insurance. We became close and still keep up with each other’s progress … (we became so close, we actually have T-shirts for our little “Roof Topper” group – courtesy of a CIDP patient that received her sct this month for CIDP!!!).

One young couple I met – the wife has MS. She was in a wheelchair and her quality of life was declining fast. He is a Tony award winner for the spoken word/poetry, so you would think they might be able to afford this. However, they ended up selling their house and other belongings and moved in with her parents (have two young children) to pay for the sct. He also wasn’t working since he was taking care of her (the children were being taken care of by her parents) – he was by her side through the sct and then also when she went into an extensive rebah program a few buildings over from the hospital. He told me he can always make more money and buy another house, but that her health was worth everything to him.

But you don’t know what it will cost until you try … based on what other’s had written/said, I was prepared for an expensive time/fight with my insurance company! I was pleasantly surprised. I took a medical leave from my office for 3 months and was also pleasantly surprised by the leave donations I received … didn’t miss a paycheck. Bottom line for me is I could have done this (with the free housing) for about $1,000 cost to me.

So I would recommend anyone interested apply! You never know what will happen until you try!!!! 🙂