Quick Update: Jeanine Utz with the Syner-G program at University of MN tried to put through Zavesca initially, it was denied. They sent in an appeal a few weeks ago. We just received a letter yesterday denying that appeal.
It said, "The reason for denial of your appeal was: Per physician review, current plan criteria only allow coverage of Zavesca for those who are 18 years of age or older with a diagnosis of type 1 Gaucher disease. M. Moore, MD. 11-7-14"
Seems obvious right? We already know that Zavesca is meant for Gaucher disease, that is why this is a clinical trial, to see if it will help, along with the ketogenic diet, for patients with lysosomal disorders.
I got an email today from Jeanine, she told me they would appeal a second time. I believe CVS has 14 days to respond to the appeals, so we'll wait and see what happens. I'm not sure if the insurance will cover it.