Well, the first news on the Cladribine is that, because it is an experimental drug, it isn't covered. Since less than 350 people have been diagnosed with ECD in 80 yr.'s, any drug they use to treat it is "experimental".
So, I've contacted a local paper and NC's state Rep. The paper had me write an editorial for starters, and Heath Shuler has called me and sent an authorization form for info about me from other agencies. I just need to determine what documents I have that might be useful in helping his office understand my case. I think I've got some pretty good ideas.
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