Dying man turned away at PM's door

LAURIE HILL: "The Government can find an extra $4 million, without hesitating, to fund a party tent at Queens Wharf but can't find it for life-saving treatment."
JONATHAN CAMERON/Fairfax NZ
LAURIE HILL: "The Government can find an extra $4 million, without hesitating, to fund a party tent at Queens Wharf but can't find it for life-saving treatment."

A New Plymouth man fighting for his life headed to Wellington to appeal to John Key for help, only to be turned away by the prime minister's security guards.

Laurie Hill, 49, is dying from the rare Pompe disease, caused by an enzyme deficiency which leads to muscle damage.

There are five sufferers of the disease in New Zealand, three of whom, including Mr Hill, headed to Parliament yesterday to speak to Mr Key.

But Mr Hill said security staff from Mr Key's office turned the group away.

They said Mr Key was in Tauranga and nobody else was available to talk to them.

Pharmac, the Government's drug funder, last week rejected another appeal by Pompe sufferers for an enzyme replacement therapy treatment called Myozyme which costs $1 million a year per patient.

Under Pharmac's exceptional circumstances scheme, people suffering from rare diseases can apply for medical treatment.

"Pharmac is disputing that the treatment we are asking for is of any value so we have brought an American woman, a living example that the treatment works, who also suffers from Pompe disease down to Wellington with us as proof."

The woman, Monique Griffin, was receiving Myozyme treatment and her quality of life had considerably improved, Mr Hill said.

The group planned to visit Parliament again today to meet Mr Key or a spokesperson from the National Party.

"The National Party made a pledge they were going to make a pathway that made access to high-cost medicine accessible.

"That was a pledge and it hasn't happened."

He said the money was available, it was just a case of how the Government chose to spend it.

"The Government can find an extra $4 million, without hesitating, to fund a party tent at Queens Wharf but can't find it for life-saving treatment," Mr Hill said.

Pharmac's announcement last week that the Myozyme treatment appeal had met further rejection meant political intervention was the only option left, Mr Hill said.

Labour Party health spokesperson Grant Robertson met the group yesterday and later said the Government's refusal to speak with them was cowardly and disrespectful.

"Three years ago the incoming National Government told these people – who suffer from a rare, progressive disease – that they would fix the problem of getting access to a highly specialised medicine, used to treat 1500 people in more than 45 countries, but not here," he said.

"That promise has been broken. No-one is pretending this is an easy issue to deal with but the Government set the expectation and it has not delivered," Mr Robertson said.

Taranaki Daily News