Jim Bona at the FDA has pulled through for us! He has located a pharmacy/distributor in the United Kingdom called John Bell and Croyden. It is a pharmacy over a hundred years
old used by the royal family. They have their own importing/exporting department. The cost for a Chenofalk 100 capsule box is £55.20 (around $90) . This is almost twice what we were paying for it from Germany but that is not an issue, I am glad we can still get it.
There are a few requirements, one that the medication has to be shipped to a Doctor or Pharmacy. I’m not sure how to deal with that, maybe we can get them to allow the Dr. to just ship directly to our residences, we’ll find out.
This is not the final solution as we know, and we are still going to pursue our goal of finding a long term solution to the medication issue, this does however buy us some much needed time to figure out the long term solution.
I have contacted Bo Allen at Rare Disease therapeutics to see what impact if any, that this new development has had on the talks with the Falk foundation about getting it from Germany. It’s not known at this time how long we’ll be able to order from the UK, our hope is until the medication is no longer available, but as we’ve seen there are no guarantees.