For the first time in many years, we got to speak directly to the Health Minister. LDNZ chair John Forman was pleased to meet with Dr David Clark after years of being blocked out by Health ministers in the previous government. The discussion centred on exactly where things are going with policy regarding funding for medicines for rare diseases. It was pleasing to hear the Minister commit to making progress in getting equity into the decision process. He clearly understood the disadvantage our diseases face and he is asking Pharmac for more information about how they will include equity in their next $5 million funding round.
John had the opportunity at this meeting to put a proposal to the minister on how a fairer system could be developed for funding of orphan drugs, and has subsequently had discussions with Ministry of Health officials about the practicalities of how such a system could work. We hold some optimism that there are “live” possibilities for us, and that all is not lost.