My Look of the Week was taken outside Parliament in Wellington. I was there fighting for the other big focus in my life - My Fight to Live. As some of you may know three years ago I was diagnosed with a rare disorder called Pompe. It is a degenerative muscle disorder, and right now I am affected mostly in my legs and slightly in my diaphragm. While the diagnoses made me evaluate the important things in life, the hardest part to come to terms with was that there is an Enzyme Replacement Therapy available to treat this disorder, but in New Zealand we do not fund it.
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.
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.
So following on from a Petition that received 3,442 signatures, and was handed into the House late last year, I went before the Health Select Committee at Parliament on Wednesday 28 June 2017. Myself and John Forman from LDNZ, (Lysosomal Diseases New Zealand), presented our case as to why we believe the Committee need to ensure that Pharmac has sufficient resources to deliver on its rare disease policy. Pharmac needs to consider the human right to health, equity in access to healthcare, reduction of disparities between population groups, and a sense of social responsibility. These are requirements across all other parts of our health system, yet Pharmac seems free to act without these moral objectives.
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
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
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