Liam Rooney: father of child with cystic fibrosis celebrates Pharmac proposal to widen access

Families of young children with cystic fibrosis are celebrating a Pharmac proposal to widen access to the drug Trikafta, which is out for consultation. 

It's been funded for children over 6 since 2023, but the agency's now proposing extending it to under-sixes.

Liam Rooney's child has cystic fibrosis and he says his family was looking for other ways to get it.  

"I'd already spoken to my boss over in Australia about the potential for us to move over if things got worse." 

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Episode Transcript

Speaker 1 (00:00):
Ryan Bricks.

Speaker 2 (00:01):
There's huge news announced today for kids who suffer from
cystic fibrosis. Farmac wants to fund two life changing drugs
for all kids with the condition, tri Cafter, which you
would have heard of, and a lift trek. Currently, only
kids from the age of six are eligible for the
funded drugs in New Zealand. Now, Liam Rooney's two year
old son, Luca has cystic fibrosis at fibrosis and he

(00:23):
joins me, Now, Liam, good evening, All right, how are you? Yeah,
very well, thank you. Liam. Tell us about what this
actually means, this decision, because for a lot of people
it sounds like something's happening from Farmac. You know, we
get these drug announcements. What does it actually mean for
the likes of your son Luca.

Speaker 1 (00:44):
It basically means that he gets every opportunity to thrive
in his life. From what we've been told from our doctors,
tri Caft is probably the most transformative drug that they've
ever seen, so that you know that doubles life expectancy
of people that suffer from cistic fibrosis. So having early

(01:05):
access for Luca from two years old means it just
gives him every opportunity to live a normal, healthy life.

Speaker 2 (01:13):
Does it mean that his body would have been undergoing
or being damaged in a way that would have shortened
his life for that you know, that would have been
happening for four years extra.

Speaker 1 (01:26):
Yeah, that's basically what the research was saying. That Like,
it was all well and good that it was funded
from six but the you know, kids are sort of
pot out in the open and ready to ready to
explore from an earlier age, and when they're at kindergarten
and entering school and so they're exposed to a lot
of bugs. And kids like Luca, when they are exposed

(01:49):
to those bugs, they're at significantly higher risk of holding
a lot of that bacteria within their body. So there
vital organs, your liver, lungs, anchreous kidneys are susceptible to
far greater risk.

Speaker 2 (02:06):
What about the Australia question, because I've read a lot
of people, a lot of parents have either gone there
to get the drug because it's funded, or have basically
a go bag and a plan to go.

Speaker 1 (02:19):
Yep, that was my wife, Courtney and me. I'd already
spoken to my boss over in Australia about the potential
for us to move over if things got worse with Luca,
and we were absolutely ready to pull the trigger if
it meant that we would give him better opportunities. And
we know a lot of people within the cistic fibrosis

(02:40):
community that have done it already, so hopefully the news
today sort of gives them hope that if there was
an opportunity for them to come home, they can.

Speaker 2 (02:51):
Just as a dad, you know, life expectancy going and
doctors saying this, going from thirty to sixty, do you
just start thinking about a whole bunch of things that
you maybe didn't let yourself think about.

Speaker 1 (03:04):
Absolutely, it's yeah. When we first heard the news that
Luca had, I had no idea what cystic fibrosis was.
And then you start to research it and you realize
just how serious it is, and you start to talk
to people that you know and they know someone that
knew someone that you had a sibling or a sister
or a brother that had passed away before these sorts

(03:25):
of drugs were available, and it just it scares the
lights out of us that, you know, without these types
of drugs, that that could have been a situation that
we would have had to have faced. We're just so
lucky and obviously think about the families that have suffered
in the past, and you just think our lucky stars

(03:47):
that that these sorts of drugs are are available.

Speaker 2 (03:50):
Now one hundred percent, and thank goodness that they are too.
Appreciate your time tonight, Liam, Thank you. That's Liam Rooney,
whose two year old son Luca has assistant fibrosis and
will now be available or eligible, I should say, for
TRIKEFTA thanks to Farmac designing to fund it. For more
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