APPROVE ORKAMBI FOR AUSTRALIANS WITH CYSTIC FIBROSIS
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There are 2,500 Australians effected by Cystic Fibrosis; most life threatening, hereditary illness effecting Australians.
1 in 25 people are carriers - many unknown to this.
Every 4 days a baby is born with Cystic Fibrosis.
Every 9 days a person with Cystic Fibrosis dies.
The average life expectancy is 37 years, most not making it to their 30's due to lung failure.
I am 29 years old with a life expectancy of just 37 years of age. That means I have 8 years left to live. I have 2 young children, a husband and a family with so much to live for. Cystic Fibrosis is a hidden disability, slowly killing me on the inside. Orkambi will improve my health in ways I only dream off. To not have Orkambi accessible leads me to a not so long life. Will you be able to explain to my babies why Mummy wasn’t able to have access to a drug, a drug that could have saved her life. Please don’t let that be a conversation that has to happen. Approve Orkambi on the PBS & remove the expiry date for my life.
Clinical trials here in Australia and overseas have proved Orkambi’s clinical effectiveness and safety and the drug was seen to not only improve health outcomes but also quality of life.
Orkambi, created to mask the F508del gene mutations, improves lung function and reduces exacerbations, hospitalisation and antibiotic use. Trial participants reported improved nutrition and subsequent BMI increases, both of which have the capacity to stave off diabetes.
Most importantly the Orkambi trial had a positive effect on the mental health of people with CF. Research shows that overall wellness leads to social inclusion and an increase in employment and education participation. These factors in turn reduce personal and family stress resulting in less depression and anxiety for patients, parents and support networks.
In Australia we pride ourselves on a fair and supportive health system and now people with CF find themselves caught in the middle of a battle between the Government and the drug development company Vertex over price. Things need to change. The CF community should not be penalised because of a breakdown in a commercial agreement. We must move swiftly as every day that a person is denied access to Orkambi is another day of potential life limiting lung damage.
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