When I first thought about contributing towards this, my hope was based around a time before our current Covid crisis. Right now we all have to have hope that everyone will do the right thing to help flatten the curve and stay indoors as much as possible and I hope that our vulnerable Pompe community stays safe.
But in New Zealand even before the Covid crisis Pompe patients were living their own personal crisis. We are one of the very few countries that do not fund Myozyme. 76 countries do fund this treatment and we live every day with the hope that our government will fund this life-saving drug that prolongs quality of life and gives us all hope for our future.
So my hope remains the same, that when we emerge from this crisis our government will look to help its most vulnerable groups of society. Not just Pompe patients but all rare disease patients who desperately need medications to be funded. We cannot be left to feel like second class citizens, we need our government to recognise its failing in supporting rare disease groups. It will be a new beginning and an uncertain one but I hope that the New Zealand government will finally listen to the 300,000 voices who so desperately hope they will be heard.
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Samantha Lenik
Vice President
New Zealand Pompe Network
M: 00 64 211865091
