I can see most on here are extremely disappointed (probably an understatement) about how content in the 4C has not met expectations.
That goes directly back to the BoD as it is unfair to put that on John given he is still adjusting the height and backrest on the CEO seat.
The sad passing away of an MND sufferer is just that. They had not on boarded to the trail and so, whilst accepted to the OLE trial, they had not formally commenced. It is likely that they have friends and maybe even family that invested in PharmAust and so it they are reading here, I am so sorry for your loss.
What the company can’t do is share information about this person because it’s illegal. They were not on a trial so they were just supplied a heap of pills and that is it. No data and no obligation and no right for PharmAust to have any interaction with the patient beyond supplying pills via the intermediary (Dr Dom). Had the person joined the trial, there would be a protocol to deal with reporting and it many not included instantly updating the market so as to avoid identifying the individual (respecting the person and their family). I am extremely grateful for what this person and their family have done.I do feel confident their contribution will make a difference!
We do have 11 folks on program. All indications at last announcement were that the drug was helping ALL patients. None of us know the specifics in this case and neither will the company, because they are not legally entitled to that privileged info.
So maybe please direct your frustrations to the things where the company has control and could have done better. I concur that this could have been far better handled, maybe as a Monday announcement with an ‘all of OLE’ update.
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