A New Zealand girl with cystic fibrosis, a disease where the immune system destroys the lungs, was given two years to live if she doesn't get the help she needs.
University student Grace Macdonald,18, moved with her family to New Zealand at the age of three and said she considers it to be her home.
She said while she is lucky because she gets the option to move to the UK to receive the "miracle-drug" Trikafta, funded, she would have to leave her family, education, friends and the life she knows in New Zealand.
Government drug-buyer Pharmac does not fund Trikafta in New Zealand and it costs nearly $500,000 per year.
"A month ago I was told if I don't take any action like having a lung transplant or getting Trikafta, I could potentially die within two years," MacDonald told The Project on Tuesday.
MacDonald said the disease makes it really hard to stay healthy.
"I don't have an appetite to eat but one of my main goals is to gain weight so I can remain healthy."
She said each day is really hard and exhausting as she has to undergo hours of physiotherapy in the morning to get her airways clear.
MacDonald said she would do anything to get the drug Trikafta which she believes will save her life.
She is calling for Pharmac to up their game and said they need to increase their budget.
"Us with CF we need this...It's painful to see there is a drug out there that could help us but we can't access it."
"The price tag on it is just insane like no one can afford that...just get onto it...we need this."
The Pharmac funding model means New Zealand ranks amongst the worst in the OECD for access to modern medicines, according to Cystic Fibrosis NZ.
Watch the full video above.
