No doubt it's a difficult process making choices on which medicines to fund in New Zealand. That said, as one of a group of patients who have been waiting for over 14 months for a decision to be made in relation to a treatment which has been shown to radically improve both quality of life and life expectancy, I can't help but feel let down by the government agency charged with this difficult task. The agency in question? PHARMAC. 

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.