TODAY |

Family pleads with Pharmac to help save toddler's life by funding cystic fibrosis ‘wonder drug’

An Auckland family are pleading with the Government drug buying agency to fund a new wonder drug for cystic fibrosis patients.

Sixteen-month-old Otis Porter has the life-threatening genetic illness.

His parents spend three hours a day treating him - from a daily dose of antibiotics to physio treatment.

Kalydeco is funded in every other OECD country. But at a cost of over $300,000 a year, it's out of the reach of the Porter family - and the 30 other CF patients who have the gene that this drug would help.

"The effects it would have on Otis' life are just huge, so big you can't even measure. It's about the quality of his life, the length of his life," his dad Eddie says.

Doctors say Kalydeco prolongs and helps save lives.

Pharmac's new Rare Disorders Sub-Committee is considering an application to fund Kalydeco - but there are 12 other drugs also being considered. 

The drug buying agency is making a decision next month on which drugs to fund.

Otis can't yet go to daycare and his parents worry about him getting sick even just playing with other kids in a playground. 

But they want him to have a normal life - and believe Kalydeco would lead to that.

Cystic Fibrosis NZ and a group called Kalydeco for Kiwis are running a joint campaign to get Kalydeco publicly funded in New Zealand.


Sixteen-month-old Otis Porter's parents are pleading for Kalydeco to be funded, to help the toddler live. Source: 1 NEWS