Reply To: SCT… What is the success rate.

Anonymous
August 27, 2012 at 6:30 pm

Rick D.

After I learned about the sct program, I called Paula (Dr. Burt’s head nurse 312.908.0059) and spoke with her regarding how to get into it.  She emailed me all the information and application and I went from there.  You do not need a referral … not sure if I ever got one.  My neuro was against it at first … but after I challenged him to really read on the program, he came around and even ended up calling and speaking with Dr Burt.  My neuro is now a big advocate of this program and is trying to get other of his patients into it …

I did not meet the study program’s protocol exactly and ended up going to Chicago for evaluation twice.  I was accepted into the program “off-study” on my second try.  Basically you must have a diagnosis of CIDP and tried/failed steroids and two other treatments.  I do not tolerate steroids, so my trial of them was very short.  The other two treatments I tried were IVIG and Immuran (an immunosuppresant) but continued to decline.  I had my sct a year ago and this was the best decision I ever made!

My insurance did pay but some do not.  I did not try to engage with my insurance (Federal BC/BS) but let Northwestern work through it and my insurance paid everything except my travel and lodging (a lot of the time is spent as an out patient) but there are quite a few that had even that paid by their insurance.

I hope this helps!

Linda