Battling for their daughter

The Herald reports:

A couple’s 1300-kilometre bicycle journey to lay a coffin on Parliament’s steps has been stopped 20 metres short after an emotional exchange with security guards.

Dunedin parents Julian and Camilla Cox have this month cycled across the South Island, towing a coffin behind their tandem bike, in a protest calling for Government drug-buying agency ’s $1-billion-a-year budget to be doubled.

On Wednesday, they finished the last leg of their three-week trip, ferrying across the Cook Strait to Wellington and carrying the box onto Parliament’s lawn with the help of fellow protesters.

The Coxes’ 19-year-old daughter Rachael is one of 550 New Zealanders who suffer from the lung disease cystic fibrosis. They say Pharmac’s current funding means she and others don’t have access to life-prolonging drugs available in other countries.

But as the coffin was carried towards the Parliament building on Wednesday, security guards halted the mock funeral procession of about 30 to tell them they didn’t have permission to take the final few steps.

After a tense exchange about what exactly had been cleared by the office of Parliament’s Speaker, Trevor Mallard, the campaigners eventually set the box down about 20 metres across the forecourt.

It left Camilla Cox outraged.

“We have cycled 1300km to make change for our child and all the people we have met on our long journey. To arrive here and have people bickering about 50 metres. How pathetic,” she said.

“Our families are dying, are being torn apart and we have small-minded people bickering about 50 metres of public space. You ask how we feel? I am furious and I’m disgusted and I’m disappointed with our politicians.”

They have my sympathy. It was petty.

The couple have also used the trip to deliver a letter to Prime Minister Jacinda Ardern pleading for the drug-buying agency to be better funded and reformed to allow for faster decision-making.

“Jacinda, you are our elected leader and you have led the world at showing compassion at times of crises,” the letter reads.

“Now we have another crisis that is costing lives on a daily basis; it’s called Pharmac and we need you to show both your world-famous empathy and leadership by giving the agency the money it needs.”

The Government is wasting up to $1.2 billion a year on free tertiary fees (which has seen enrolments drop). Think what a difference ut would make if even half that money went to Pharmac.

But I guess more students vote than families of cystic fibrosis sufferers.

Their petition is here. They hope t get 250,000 signatures.

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