Reply To: A few questions? New and scared

December 24, 2013 at 4:36 am

GSLM,

The SCT program is controversial within the GBS/CIDP and neurology communities. I attended the GBS/CIDP conference in Los Angeles two months ago. The speaker was Dr Richard Lewis. Dr Lewis is a member of the GBS-CIDP Medical Advisory Board and a renowned researcher. He identified the “Lewis-Sumner” variant of GBS.

I asked him what his take was on SCT. He is following the results but was skeptical of it being a lasting cure. The ‘bang for the big bucks’ (my words) may be overrated. There is a need to follow patients over a longer period of time (many years) to better understand the consequences.

How long it may take the FDA to approve a complicated and controversial procedure such as SCT is anybody’s guess … and, to get our insurance companies to pay for it – well, that’s another story.