To date, minutes from three PHARMAC meetings which have taken place since November 2012 - in relation to funding the only treatment for the ultra rare and debilitating disease PNH - have not been made public.
We were advised by PHARMAC to expect an update in the second week of April. Now in the second to last week of May - no further news.
In speaking to people who have worked in this space for years, I've been introduced to an interesting term which seems apt - rationing by delay.
Again, I appreciate the balancing act at play. But there is much at stake and it would seem little regard being shown to the stakeholders whose lives are directly affected.