Cystic fibrosis sufferer 'born again' after using 'miracle' drug

Source: 1News

A New Zealand woman fighting for access to the life-saving cystic fibrosis drug Trikafta has described taking the drug as like being "reborn in a completely different body".

Bella Powell is one of roughly 500 Kiwis who has cystic fibrosis (CF), a degenerative genetic condition that mainly affects the lungs and the pancreas but can damage other organs too.

She is part of efforts involving several individuals and organisations to get Trikafta subsidised.

It was approved for use in New Zealand by MedSafe late last year and Pharmac, the Government body that decides which medicines to subsidise, has said it wants to fund the drug. But no decision has yet been made.

It means that the only way Kiwis can currently access the drug is privately, which costs more than $300,000 a year per person.

Earlier this week, a petition of more than 43,000 names calling on the Government to urgently fund the drug was handed to Labour MP Shanan Halbert on behalf of the Health Select Committee chair, Dr Liz Craig.

Meanwhile, Australia has announced that it will subsidise Trikafta from April 1.

Powell told Breakfast that progress is happening but slowly.

“Change is hard to come by in the New Zealand healthcare system. It’s very set in its ways.”

She was diagnosed with CF before birth, when an ultrasound revealed that she had a bowel obstruction.

She underwent 13 hours of surgery when she was born to remove two-thirds of her small intestine and says the whole process of diagnosis was "crushing" for her family.

Powell says that before she started using Trikafta she was alive but couldn’t live.

“I couldn’t get from my bedroom to my kitchen without feeling like I’d run a marathon. I couldn’t hold a conversation.

“I couldn’t laugh, I couldn’t be a part of my family or be with my friends because I was just in so much pain.”

However, within six hours of using Trikafta for the first time she noticed a huge change.

“My CF was no longer controlling my life. I was able to see my future come back into focus and really grasp it in that moment.

“I’m not lying when I say this drug is the miracle people with CF have been hoping for their entire lives.”

On Tuesday, Powell was awarded the top prize at the annual GirlBoss awards, which seek to recognise young women having an impact in many parts of New Zealand society.

“I think the important thing to recognise when talking about cystic fibrosis and how many people there are with it is that even though we’re a small population, that doesn’t mean our lives are any less worthy of being cared for within our healthcare system.”