Yesterday (7th June 2011) we met in Wellington to launch a campaign to get medicines for rare diseases funded in NZ.
“We” includes our 4 New Zealand Pompe patients Laurie, Freda, Dean and myself, John Forman from NZORD, Jenny Noble from LDNZ, Chris Higgins and Marty Davis from MDA and some parents of children/adults who have been, and still are being treated with ERT therapies.
Peter Moodie of PHARMAC is still adamant there is not enough long term data to prove Myozyme works, even though they said it does work in my “decline letter”! Stalling tactics of course, they just don’t want to fund us. But they will, we’ll make sure of it. I will post links on the “current news” page so you can see what we were up to yesterday.
Knock Knock Peter – let us in! Just how wide open is that door??