2 May 2016 - Without subsidy, it costs about US $260,000 each year.

Ms Northam, 19, lives with cystic fibrosis, a chronic condition that affects the lungs and digestive system.

She was 12 when she was first admitted to hospital for a lung infection and spent nearly half of last year in hospital. She has already missed seven from eight weeks of university this year.

But just days after Ms Northam started using a new and life-changing drug that could help around 1000 sufferers, the government ruled not to include it on the Pharmaceutical Benefits Scheme.

Ms Northam’s change.org petition asking the government and manufacturer to reach an agreement so the drug can be included on the PBS has received more than 30,000 signatures in one week. “I just wanted us to be heard,” she said.

For more details, go to: http://www.theherald.com.au/story/3883166/patients-campaign-for-access-to-new-drug/