Speech: NZ Organisation for Rare Disorders March to Parliament

It has often been said that the moral test of any Government is how they treat those who are in the dawn of life; our tamariki; those who are in the twilight of life; our pakeke; and those who may fall in the shadows of life – what we might also call te pani me te rawakore: the sick, the needy and the disabled.

The Maori Party shares this view, believing that our society is only as strong as its most vulnerable members. Our thinking around the orphan drugs access policy in general; and the funding of specialised medicines for Pompe Disease specifically, is influenced by this thinking.

We are pleased to welcome the Muscular Dystrophy Association, Lysosomal Diseases NZ and the NZ Organisation for Rare Disorders, to Parliament today.

We are concerned that neither Labour – in nine years of plenty – or the National Party over the last three years has been able to resolve this issue, despite countless reports and endless advocacy on behalf of those concerned.

And I do want to mihi to those here today, who are literally fighting for their survival; fighting for the best chance of life.

There is a profound injustice at play, when simply due to the rarity of the diseases in question, that some families are placed at considerable disadvantage when it comes to the consideration of the most appropriate treatment.

The Maori Party want our whanau to be the best that they can be and to be supported by an equitable, sustainable health system. In this capacity, we are calling for an evaluation of the Exceptional Circumstances funding process which governs the management of diseases like Pompe disease that need highly specialised treatments.

We would like to encourage support for a robust orphan drugs access programme that will ensure treatment for our Pompe patients and other rare diseases.

Our major argument is that no-one in New Zealand that is ill should not have support to treat the disease. Everyone must have a right to treatment.