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‘We are begging for our lives’

Allyson Lock with a flyer for the right to live petition presentation. PHOTO/ELI HILL

Fight for drug funding to go on

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Masterton woman Allyson Lock needs Myozyme in order to stay alive and she says that has left her, and others suffering from Pompe disease – a rare inherited disorder – “literally begging” for their lives.

Today, Lock will be on the steps of Parliament along with representatives from health advocacy groups such as Lung Foundation New Zealand, and the Breast Cancer Aotearoa Coalition.

The group will present eight petitions to Parliament containing more than 17,000 signatures calling for 26 drugs to be funded.

For Lock, who has been campaigning to get Pharmac to fund Myzome since she was diagnosed with Pompe disease in 2010, it was an opportunity to show “strength in numbers”.

It was to show everyone that not just one person was affected, Lock said.

“There’s a whole lot of us here who need help. The point is we’re citizens of this country. We’re going to die without treatment and the government won’t help us – that’s it in a nutshell, really.”

Myzome – the only treatment available to people with Pompe disease — is funded in more than 75 countries, Lock said.

The only other OECD countries that did not fund it were Iceland and Turkey.

The disease weakens people’s core muscles making it difficult to breathe. It also affects the legs.

At present, there are 11 people affected by the disease in New Zealand, and Lock is one of four who receive compassionate treatment from the drug company that produces Myzome – something she says is usually reserved for residents in third world countries.

“People bag the drug companies all the time, but they’re the ones showing us compassion – the government should be bagged for that.”

As of Friday, Lock’s individual petition had 1486 signatures but she was aiming for 2000 before today.

She has been in contact with Labour list MP Kieran McAnulty who said he would receive her petition on the day depending on his schedule.

“I’m going to keep doing this until they fund it – that’s a promise I made to myself and to others. They can keep turning me down but I will keep turning up,” Lock said.

Pharmac said it was overhauling its decision-making process to give better insight into what medicines are – and are not – being actively considered for funding.

“Up until now, there have been a number of funding applications that are unlikely to be funded but have remained open in the application system, so Pharmac is proposing to decline them.”

Pharmac chief executive, Sarah Fitt said Pharmac was working hard to make its decision-making processes clearer, faster and simpler.

“We’ve heard from New Zealanders that they want Pharmac to make definitive decisions on funding applications so they can have some certainty, even if this is a decision to decline funding,” Fitt said.

The change is just one of many Pharmac was making to increase transparency around decision-making and reduce the time medicines spent on the “waiting list”.

A link to Lock’s petition can be found on https://nzpompenetwork.weebly.com/

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