PHARMAC visit to Wellington

Well, it was an interesting day. Pharmac gave us 2 hours of their time. There were many things discussed. At the end of the meeting I had a chance to talk to Peter Moodie (head of Pharmac) to discuss my own application for ERT which was of course declined. He asked me what I thought about it. I said I thought it was lazy, ignorant, poorly researched, full of errors and that they hadn’t even followed their own criteria in reaching their decision. I told him that they should have me working for them because at least I would do a good job. I said when they are deciding on whether someone lives or dies, they should at least give us the courtesy of getting their facts correct. Several times they tried putting words in our mouths, tried turning it around on us saying that if we get this medication so many others would be disadvantaged…Anyway, at the end of it all, we all came out of there feeling like we had served ourselves well. We are not neccessarily confident that we will get ERT funded, but we did not let them beat us into a pulp and make us feel like a bunch of fools. I think we stood up to them and i’m very proud of our small group of pompe peeps, and also we had wonderful support from MDA, LDNZ and NZORD. Thank you everyone for your kind thoughts 🙂 xo

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