Actually something makes more sense now... On their last visit Jan 5th, they were told by one of the doctors that an extension of six months had been approved. I assumed they were confused (my family member and carer) and were talking about the extension that we already know about.
It could well be another extension for the earlier trial participants? Because everyone had already been told about the first extension, so that wasn't "news". Further extensions have certainly been discussed from day one. We said "if this thing works, but takes years to approve, what happens?". All the other participants we have met asked the same thing.
We were told in this case they would do everything they could to continue to provide the medication and extend the trial (as long term effects were something they would need to monitor anyway).
My family member is just reaching 4 months, so we should know a lot more about extensions etc. before we have to worry about the end of the 12 months.