Lengthy hospital stays are familiar ground for many of the 3500 Australians living with cystic fibrosis, the country's most common genetic disease.
Ms Day is one of many campaigning for Trikafta to be added to the Pharmaceutical Benefits Scheme for everyone with cystic fibrosis. Genevieve Handley, who started the parliamentary petition, said the decision would only cover about 20 percent of the 2200 people waiting to access the medication. Listing Trikafta on the PBS was also discussed at a PBAC meeting in December, with the independent advisory panel's decision expected to be made public tomorrow.
Ms Handley, who has cystic fibrosis, said Trikafta had been a gamechanger for her after she was approved for Vertex's limited compassionate access scheme, three days before she was due to meet with a lung transplant team."My lung bleeds that had continued for months have stopped and I no longer need to see the transplant team.
"He has been so sick but having access to this medication would basically give him his life back and help him be able to realise that that he can do more than just be the sick kid," she said.9news.com.au has contacted the Department of Health for comment.
Bad luck, sufferers. Nobody cares apparently, because the news is all about Omicron 'sufferers' being kept waiting at A&E ramps.
Should have spent the money on this instead of the shit vaccine
A simple test by each prospective parent before breeding would save as much pain and suffering.
Put it on the PBS you dogs.
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