Seventeen-year-old Rotorua teenager Osiris Daniels has been living in isolation his entire life, a necessary requirement when you've got cystic fibrosis.
Cystic fibrosis is a life-threatening disease that affects the lungs and digestive system. It also claimed the life of Osiris' older sister Santana at just 21. Their mother Trish doesn't want to bury another child, and is fighting to get access to the drugs that could prolong her son's life.
"My main focus is him and only him and how am I going to keep him alive. He's at an age where I'm scared that I'm going to lose him."
Earlier this year Pharmac announced it would fund ivacaftor (Kalydeco) for treatment of people with cystic fibrosis - unfortunately for Osiris this medication isn't suited to his type of cystic fibrosis.
Cystic Fibrosis NZ CEO Jane Bolland says despite this recent win for the cystic fibrosis community in NZ, we aren't keeping up with the new treatments coming on to the market overseas.
"Unfortunately CFers in NZ are disadvantaged because we don't have the same access to precision medications that are available overseas. One of these medications has just become available in the US and it's called Trikafta, it's a precision medication and acts on the cause of the condition, rather than the symptoms."
Trish adds whether it prolongs Osiris' life or not, they just want to have the option to try this medication.
"It's not only for him, it's for all the CFers that require it. I think everyone should have a chance. It's better than me planning a funeral, because that's what I had to do with my daughter and I'm not going to do it with my son, so I'm going to fight hard to get that drug."
The Hui
