Let Them Live
These kids belong to a group of 35 New Zealand children who suffer from the motor neuron disease Spinal Muscular Atrophy (SMA). Spinraza would change these kids’ lives and is funded in over 50 countries but not in New Zealand. The annual estimated cost for all 35 children to receive this treatment is $6 million dollars. Pharmac have assessed the drug and given it a high priority rating, which means the only reason It is not funded is because the agency does not have enough money. As each week passes, each child is at risk of losing another motor neuron. Time is not on their side; that motor neuron could be the ability to sit, to stand, to swallow or breathe.
Patient Voice Aotearoa has fought tirelessly for better medicines access and is deeply disturbed that we are having to fight for children to have access to a proven medicine that will stop this disease in its tracks. Fiona Tolich, who has SMA and is a trustee of Patient Voice Aotearoa, states “At a time when the government is giving out cash for just about everything, imagine being the parents of these children and realising that the government sees no value in treating them. This government has given $72.5 million to the racing industry, $66.3 million to Fletchers, and $15.4 million to Sky City. This is a matter of the New Zealand government prioritising the lives of our kids. Where is the kindness? How the hell is this happening in New Zealand? Who lets kids suffer like this? How can the Health Minister sleep at night, knowing he is allowing this to happen?”
Liam from Hawke’s Bay celebrated his 9th birthday this week. He says, “I feel sad. I want Spinraza and I want to walk. It’s sad because everyone else gets it. I don’t know why we don’t have it but I know it’s not fair.” Sophie (6) from New Plymouth says “I would like to be able to play with my friends in the school playground and to be a dancer like my sister.” Zayden (10) from Hastings says “I want to be able to play video games and to eat without having to ask for help.”