MP calls on Government to make lifesaving drug available for Cystic Fibrosis sufferers

21 Jul 2020

Posted September 5, 2017

Federal Member for Mayo Rebekha Sharkie has called on the Federal Government to hold urgent talks with pharmaceutical companies to make a life-changing drug available for sufferers of Cystic Fibrosis.

In a motion put to the Parliament yesterday, Rebekha urged the Health Minister, Greg Hunt, to intervene in the stand-off over the cost of the drug Orkambi and begin negotiations with manufacturers.

Orkambi is a treatment that is proven to improve lung function in older children with Cystic Fibrosis, a genetic condition that affects the lungs and digestive system, but it currently costs up to $300,000 per patient per year.

“The effectiveness and safety of Orkambi is long-standing,” Rebekha said.

“I understand cost was main reason Orkambi was not added to the Pharmaceutical Benefits Scheme last month by the PBS Advisory Committee.

“Now I have read various media reports that place the blame for cost at the foot of manufacturers and other that place the blame on Government but we should not be playing the blame game while children suffer.

“… Cystic Fibrosis sufferers in Australia and their families are calling for Minister Hunt to intervene and begin negotiations with the pharmaceutical manufacturers, and I lend support to that call.”

Cystic Fibrosis affects over 3000 people in Australia and over one million people carry the recessive gene that causes the condition.

When a person is diagnosed with Cystic Fibrosis, they are sentenced to a life of frequent hospital stays and ongoing physiotherapy.

Cystic Fibrosis causes a sufferer’s mucus glands to secrete large amounts of mucus which can clog lungs.

This bacteria becomes trapped in the lungs, leading to repeated infections and blockages.

It causes irreversible lung damage. Lung transplants are a common measure, but they are not a cure.

Orkambi is a treatment that is proven to improve lung function.

Clinical trials have shown a reduction in lung damage by at levels 40% less than normal sufferers of Cystic Fibrosis.

It reduces instances of chest infection and hospital stays.

Orkambi was recently been approved in Canada for Children aged between six and 11 years of age.

It has also been approved in the United States for children aged 12 and over.

Patients in Ireland, France, Germany, Greece and Italy all have access to the drug.

“I am hopeful that Australia will eventually join these countries in allowing patients access to the drug because any delay is too long,” Rebekha said.

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