IT'S MY BEST HOPE

She has cystic fibrosis and a miracle drug that could drastically improve her quality of life isn't available in SA - so she's taking the US pharmaceutical giant to court 

- JANA MARX

SHE was six years old when she was diagnosed with the disease and the illness has been part of her life ever since.

Something as simple as the common cold can turn serious and leave her struggling for every breath.

A small pharmacy of pills and syrups becomes necessary to fight every infection – but after each bout of illness her body is left a little more resistant to antibiotics, a little more vulnerable to sickness.

Although Cheri Nel (38) fights hard for her quality of life, living with cystic fibrosis isn’t easy. Which is why she’s embarked on a David vs Goliath battle for the one drug that will make a significant difference to her life.

It’s called Trikafta and right now it’s cystic fibrosis patients’ best hope for a longer and better life.

“It’s not a cure but it’s the closest thing we have to it,” Cheri says.

Trikafta contains three precision medications – ivacaftor, tezacaftor and elexcaftor – which don’t only treat symptoms but target the basic defect from specific genetic mutations that cause cystic fibrosis.

“It’s a miracle drug,” says Dr Marco Zampoli, paediatric pulmonologist and head of the cystic fibrosis clinic at the Red Cross Children’s Hospital in Cape Town.

“If started early in life, it will prevent irreversible damage to the organs, especially the lungs.

“Instead of often dying at a young age, people with cystic fibrosis can look forward to a much healthier and normal life.”

Alan Dunn, chairman of the SA Cystic Fibrosis Association, says the difference the drug makes to people’s lives is remarkable.

“People who previously couldn’t work can start working again. Those who didn’t have energy before can exercise regularly.”