Hearing those words sent me into a frenzy of wanting to understand our Health System, to understand why we don't fund? Why 76 other countries DO fund the treatment? Trawling through the medical jargon of discriminatory policies and procedures of Pharmac, (the Pharmaceutical Agency that decides which medicines get funded), made me angry and made me want to fight for treatments for rare diseases. People like me who are otherwise abandoned to die by our Government.
I fight for my family, I fight because I believe we are not a society that so blatantly disregards the sick and vulnerable. I can't give up until I know I have tried my hardest to make a change, and I can't give up on something that I can't go a day without thinking about.
(#LDNZ #rarediseases #billenglish #jonathancoleman #newzealandpompenetwork #tvnz #nzherald.co.nz