PNH Support Association of NZ
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How long is too long?

5/19/2013

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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. 

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    Our struggle for a lifesaving medicine

    We are a Patient Association that represents NZ patients suffering from the ultra rare blood disorder, PNH. 

    NZ patients are desperately seeking access to a treatment which has been demonstrated to restore quality of life and life expectancy to PNH patients. 

    The decision to fund this treatment has been with PHARMAC since February 2012 and as at May 2013, we have received no indication of the timeline for PHARMAC's decision making process. 

    This blog is a collection of thoughts and comments from patients and supporters.

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