Ben Nexhip can finally breathe easy

By Charmayne Allison

BEN Nexhip can still pinpoint the moment his life reached a crossroads.

It was May 2016, he was 27 years old.

And he was struggling to breathe.

Ben had lived with cystic fibrosis – a life-threatening genetic condition that can seriously impact the lungs and digestive system – since he was born.

But after a relationship breakdown left him suddenly on his own, Ben had allowed his health regimen to gradually slip.

And before he knew it, his lung capacity was straining at a dangerous 34 per cent.

Luckily, fate stepped in.

Or, to be more specific, ORKAMBI did.

A new wonder drug, ORKAMBI was the first to treat the underlying cause of CF instead of just treating the symptoms.

While it wouldn't be PBS-listed until early this year, Ben was given access to the drug on a compassionate basis as his lung capacity was so low.

In a stunning 180-degree turn, the medication pushed his lung capacity back to the low 60s, where it’s now plateaued.

Looking back, Ben feels deeply lucky to be where he is today.

Especially when, tragically, he’s already lost two friends to CF.

"Plus I've seen other friends with CF who end up unable to work, not really doing much at all, which would be a real kick in the guts mental health-wise," Ben said.

"It's a reminder I need to keep looking after myself otherwise it can spiral pretty badly."

Ben was just two weeks old when he was diagnosed with CF.

As his condition was relatively mild, he barely noticed it in the initial years.

But his first hospital admission at 12 – and subsequent admissions throughout high school and his early 20s – brought the condition to the forefront.

While Ben was always aware he had CF, those surrounding him often weren't.

"I remember being in classes in high school and I'd cough and cough and cough until the teacher would say, 'You shouldn't have come to school when you're sick'," he said.

"I struggled to explain that I was always like this."

While CF didn't prevent Ben from participating in sport throughout his high school years, it began to slow him down in his 20s and 30s.

"But you sort of learn to live with that and find other things to do," he said.

"These days I work at home on the farm with my parents and the schedule is pretty relaxed so I can find time to do what I need to do when I'm not feeling well."

But three years ago when Ben’s health reached rock-bottom, he was working for a different company and was struggling to find time to address his health needs.

"Which doesn't really work for what I need. Because it's sort of a regimen of physio, it's fairly intensive and time consuming," he said.

And with no-one pushing him to watch his health, Ben's lung capacity plummeted.

"It's something that slowly creeps up on you. Over the space of two years, if you drop two or three per cent every three months, then all of a sudden you're down 20 per cent over two years," he said.

"It's a fair way. So I was about 34 per cent lung capacity so once you get under 30 they start to think about lung transplants and things like that."

At the eleventh hour, Ben was handed ORKAMBI – and never looked back.

"Before the drug, you could creep lung capacity back up a bit by going into hospital for a fortnight or so and if you were in your mid-30s you might get yourself back up to say mid-40s," he said.

"But maintaining that was always the issue and if you got a flu or a cold it wouldn't take much to really knock you back.

"But the consistency since ORKAMBI has just been really amazing, it's really flatlined."

Ben said it was thanks to fundraising events like the Breathe Easy Cocktail Party that these groundbreaking drugs were developed.

"The money is obviously very important – but these events also get knowledge about CF out there," he said.

"When CF comes up in conversation, it's amazing how many people say, 'what's that?'

"Not many people know it's not just about lungs. It also affects the digestive system, leading to malnutrition and for males, natural reproduction is not an option.

"There's so much more to it than a bad cough and dodgy lungs."

Ben Nexhip will be speaking at the fifth and final Breathe Easy Cocktail Party at Radcliffes on Saturday, September 7 from 7pm to 11.45pm.

Tickets cost $115 per person and include entry, entertainment, drinks and a finger food package.

For more information and to book a ticket, visit