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Speaker 1: Ryan Bricks.

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Speaker 2: There's huge news announced today for kids who suffer from

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Speaker 2: cystic fibrosis. Farmac wants to fund two life changing drugs

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Speaker 2: for all kids with the condition, tri Cafter, which you

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Speaker 2: would have heard of, and a lift trek. Currently, only

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Speaker 2: kids from the age of six are eligible for the

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Speaker 2: funded drugs in New Zealand. Now, Liam Rooney's two year

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Speaker 2: old son, Luca has cystic fibrosis at fibrosis and he

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Speaker 2: joins me, Now, Liam, good evening, All right, how are you? Yeah,

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Speaker 2: very well, thank you. Liam. Tell us about what this

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Speaker 2: actually means, this decision, because for a lot of people

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Speaker 2: it sounds like something's happening from Farmac. You know, we

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Speaker 2: get these drug announcements. What does it actually mean for

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Speaker 2: the likes of your son Luca.

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Speaker 1: It basically means that he gets every opportunity to thrive

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Speaker 1: in his life. From what we've been told from our doctors,

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Speaker 1: tri Caft is probably the most transformative drug that they've

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Speaker 1: ever seen, so that you know that doubles life expectancy

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Speaker 1: of people that suffer from cistic fibrosis. So having early

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Speaker 1: access for Luca from two years old means it just

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Speaker 1: gives him every opportunity to live a normal, healthy life.

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Speaker 2: Does it mean that his body would have been undergoing

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Speaker 2: or being damaged in a way that would have shortened

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Speaker 2: his life for that you know, that would have been

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Speaker 2: happening for four years extra.

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Speaker 1: Yeah, that's basically what the research was saying. That Like,

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Speaker 1: it was all well and good that it was funded

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Speaker 1: from six but the you know, kids are sort of

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Speaker 1: pot out in the open and ready to ready to

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Speaker 1: explore from an earlier age, and when they're at kindergarten

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Speaker 1: and entering school and so they're exposed to a lot

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Speaker 1: of bugs. And kids like Luca, when they are exposed

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Speaker 1: to those bugs, they're at significantly higher risk of holding

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Speaker 1: a lot of that bacteria within their body. So there

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Speaker 1: vital organs, your liver, lungs, anchreous kidneys are susceptible to

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Speaker 1: far greater risk.

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Speaker 2: What about the Australia question, because I've read a lot

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Speaker 2: of people, a lot of parents have either gone there

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Speaker 2: to get the drug because it's funded, or have basically

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Speaker 2: a go bag and a plan to go.

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Speaker 1: Yep, that was my wife, Courtney and me. I'd already

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Speaker 1: spoken to my boss over in Australia about the potential

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Speaker 1: for us to move over if things got worse with Luca,

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Speaker 1: and we were absolutely ready to pull the trigger if

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Speaker 1: it meant that we would give him better opportunities. And

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Speaker 1: we know a lot of people within the cistic fibrosis

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Speaker 1: community that have done it already, so hopefully the news

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Speaker 1: today sort of gives them hope that if there was

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Speaker 1: an opportunity for them to come home, they can.

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Speaker 2: Just as a dad, you know, life expectancy going and

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Speaker 2: doctors saying this, going from thirty to sixty, do you

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Speaker 2: just start thinking about a whole bunch of things that

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Speaker 2: you maybe didn't let yourself think about.

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Speaker 1: Absolutely, it's yeah. When we first heard the news that

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Speaker 1: Luca had, I had no idea what cystic fibrosis was.

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Speaker 1: And then you start to research it and you realize

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Speaker 1: just how serious it is, and you start to talk

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Speaker 1: to people that you know and they know someone that

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Speaker 1: knew someone that you had a sibling or a sister

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Speaker 1: or a brother that had passed away before these sorts

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Speaker 1: of drugs were available, and it just it scares the

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Speaker 1: lights out of us that, you know, without these types

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Speaker 1: of drugs, that that could have been a situation that

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Speaker 1: we would have had to have faced. We're just so

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Speaker 1: lucky and obviously think about the families that have suffered

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Speaker 1: in the past, and you just think our lucky stars

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Speaker 1: that that these sorts of drugs are are available.

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Speaker 2: Now one hundred percent, and thank goodness that they are too.

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Speaker 2: Appreciate your time tonight, Liam, Thank you. That's Liam Rooney,

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Speaker 2: whose two year old son Luca has assistant fibrosis and

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Speaker 2: will now be available or eligible, I should say, for

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Speaker 2: TRIKEFTA thanks to Farmac designing to fund it. For more

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Speaker 2: from Hither Duplessy Allen Drive, listen live to news talks.

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