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Government breaks promise to rare disease sufferers

Grant ROBERTSON
Health Spokesperson

18 October

Government breaks promise to rare disease sufferers

The Government’s refusal to explain why it has not delivered on a promise to ensure access to life-saving drugs for Kiwis suffering from rare diseases is cowardly and disrespectful Labour’s Health spokesperson Grant Robertson says.

“A group of people suffering from Pompe disease, along with their representatives, arrived at Parliament today after repeated requests for meetings with John Key and Tony Ryall had been turned down.

“They asked to meet someone – anyone - from the Government and they were turned away. Whatever the difficulty of dealing with this policy issue, the Government should show some respect and meet with these people.

“I met them and the Government needs to do the same. It needs to listen to their concerns, because they are not going to leave this alone,” Grant Robertson said.

“Three years ago the in-coming 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 available here.

“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.”

“Today’s meeting confirmed that these people understand the value of the Pharmac model to New Zealand in terms of the bulk purchasing of drugs. However their concern is that the policy settings that Pharmac operates under are not appropriate for measuring the benefits of these medicines.”



“I made it clear that while I don’t believe politicians should be choosing what medicines are funded, we do have a moral responsibility to ensure that we set the framework that sees patients treated fairly and humanely.

“The Medicines Strategy sets the framework for how highly specialised medicines might be managed. The Government should do all it can to implement that strategy.

“In the meantime, the least John Key and Tony Ryall can do is show some respect by meeting with these people and discussing their concerns,” Grant Robertson said.

ENDS


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