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
Well, today I found out that our dumbass government thinks i'm not worth a crap. Here is the email I have sent to our local Minister of Parliament this evening. I will post his reply when i get one. I would appreciate anyone writing their thoughts for me to pass onto our idiots in charge.
Dear Mr Hayes I have had official word today that Pharmac have refused to fund treatment for the rare disease that I unfortunately have. Pharmac say it is too expensive. I know that Pharmac only receive 3 million dollars for Exceptional Circumstances medications per year. They have estimated the cost of my medication at $575k per year, every year for the rest of my life. It seems clear that the government does not supply Pharmac with enough money to cover all of the exceptional circumstances applications which are applied for each year. Please bear in mind that there are four of us here in New Zealand with this disease. Some of us will cost more than me, some of us less. The medication dose depends on the weight of the individual. One of the members of the New Zealand Pompe Network is 6'9" tall and he is 110 kilos in weight. A man that tall is never going to weigh a small amount! What do we need to do to get your government to HELP US? I cannot believe that you cannot save our lives! What about the losers that kill their friends in drunken road smashes? Ambulances turn up to save them without a moments hesitation! But we, who have some horrible deadly disease which is no fault of our own, are left languishing alone and forgotten down the bottom of the heap where no one gives a toss and our government says we're not worth a damn. I'm disgusted!!! I'm begging you, do something to save the 4 of us here in New Zealand!!! I've got the opportunity to go overseas to try to save my life since our government is so totally useless. Is this government willing to help subsidise this venture? Are you willing to help us get to the United States to help us save our own lives? Are you? I very much look forward to your reply. We have much to discuss. This has been many many months in the works, and finally, the answer I knew I would be giving you all along. Sincerely Allyson Lock