New Zealand will not fund medication for pompe disease. Official!

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