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Kiwi woman trapped overseas can't come home because her medication isn't funded

Author
Newstalk ZB,
Section
Audio,
Publish Date
Thursday, 6 December 2018, 9:25AM
Rachel Paine was living in Australia when diagnosed and needs special drugs every two weeks to help keep her alive.

A Kiwi woman says she is incredibly grateful she was diagnosed with a rare immune condition while living in Australia because her medicine isn't funded in New Zealand and would cost her out $600,000 per year.

Rachel Paine was diagnosed with paroxysmal nocturnal haemoglobinuria (PNH) while living in Perth so doctors arranged for her to go on a drug called eculizumab (marketed as Soliris) which is publicly funded in Australia.

Speaking with Mike Hosking, Paine said if she hadn't been diagnosed in Australia she would have had a very "different outcome".

"I am very thankful and lucky. I am very lucky I was diagnosed here and have access to this treatment."

She said when she was first diagnosed she wanted to move back to New Zealand.

"I was diagnosed about three years ago, when I was first diagnosed and very unwell and up until I met my partner four or five months ago, I'd really been ready to move home."

"I didn't really have a lot of support here [Australia] and dealing with a condition like this, you need the support and even just the simple things of not being able to have mum or dad come along to a hospital visit or things like that, just having that support was completely lacking so, of course, I wanted to move home, I had friends and family there [New Zealand]."

New Zealand's drug-buying agency Pharmac made a statement in 2013 declining a funding application for eculizumab. The statement said the price - then about $670,000 per patient per year - sought by Alexion Pharmaceuticals was "extreme", and higher than in other countries.

"Eculizumab could benefit up to 20 people, at a cost of approximately $10 million per year. If funding was committed to the drug, it would mean potentially tens of thousands of New Zealanders missing out on new medicines which offer more health gain overall," Pharmac said at the time.

Paine said she understands Pharmac can't fund everything but said it feels like her life isn't important.

"You don't think you are going to be diagnosed with a rare disease and then when you are, you are sort of told, "well sorry you're too expensive to save", that's basically what they are saying, that my life isn't worth it."

"That's really hard to understand, especially when we come from a country that touts, "we've got public healthcare, you don't need private health insurance, we will look after you" and then be told "oh sorry, it's too expensive so we can't do anything about it" even when it's a proven drug and the only drug available and without it people die."

Dr Collette Bromhead, chief executive of the NZ Organisation for Rare Disorders, told the Herald it was tough to get medicines funded for patients with rare disorders such as PNH.

"New Zealand is slipping further and further behind other countries for access to medicines."

Some Kiwi patients had been given eculizumab at no charge by Alexion, but Paine was unable to get such compassionate assistance. As such, treatment in New Zealand would likely be much less effective blood thinners and transfusions.

She's able to return home for occasional holidays, with her drugs sent over from Australia so they can be given at Auckland City Hospital.

Last year Paine moved to Melbourne, to be closer to home and also because the city is a base for leading specialists. The move was extremely tough, with her low energy levels making it hard to work full-time and get out to make new friends.

Then she met her Australian partner, Tim, which "kind of changed everything".

"Now I have support and somebody there. And a base that I haven't had in a really long time. Which is pretty great."

The Herald met Paine and her parents John and Heather at their Lynfield home, during a short visit home - to introduce Tim, and help turn on the Christmas lights that make the home something of a local landmark.

Wednesday was Paine's 27th birthday. There are other drugs for her condition in the pipeline, which could be much cheaper and even more effective. Her hope is to regain normal energy levels, and to have the option to return permanently to New Zealand.

She is eternally grateful to have been diagnosed in Australia, a country she now feels less alone in and which has "allowed me to keep living, and live a reasonably normal life".

The Paines considered selling their home to help their daughter, but the cost would be ongoing. John Paine said he understood Pharmac had a limited budget, but the lack of support was still hard to accept.

"The toughest thing was knowing she was over there on her own," he said. "She's pretty strong getting through.

"We can't say, 'let's have a cup of coffee'...but we're more concerned about Rachel's happiness and health, and both of those boxes are more ticked now than they were a couple of years ago."

PNH (paroxysmal nocturnal haemoglobinuria)

• Blood and immune system disorder that affects about one in a million people.
• Leads to anaemia, severe stomach pain and potentially fatal blood clots, stroke, organ failure.
• A drug called eculizumab cuts the risk of blood clots and prolongs survival - but is needed life-long and costs upwards of half a million dollars a year, and isn't funded in NZ.
• New drugs are in development.

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