Rebekha Sharkie (Mayo, Nick Xenophon Team) Share this | Hansard source

I move:

That this House:

(1) notes that:

(a) Cystic Fibrosis is a condition that causes impairment of the lungs, airways and digestive system and leaves sufferers with an average life expectancy of 37 years;

(b) over 3,000 Australians live with Cystic Fibrosis and every four days an Australian child is born with the condition;

(c) over one million Australians are carriers of the gene that causes Cystic Fibrosis;

(d) there is currently an application before the Pharmaceutical Benefits Schedule Advisory Committee (PBSAC) for the drug known as Orkambi which is used to treat the most common mutation of Cystic Fibrosis; and

(e) if approved, Orkambi will be available to over 1,000 Australians aged 12 and over who are currently suffering from this life shortening condition; and

(2) calls on the Government to:

(a) continue to support research into Cystic Fibrosis and its possible cure; and

(b) expedite the PBSAC review of the application to have Orkambi listed on the Pharmaceutical Benefits Scheme so that over 1,000 Australians can have access to a potentially lifesaving drug.

I rise today to speak about a disease that affects over 3,000 Australian men, women and children: cystic fibrosis. Cystic fibrosis is a life-threatening disease for which there is no cure, and it is the most common life-threatening disorder among Caucasians across the world. Over one million Australians carry the gene that causes cystic fibrosis. When a person is diagnosed with cystic fibrosis, they experience a life of frequent hospital stays and ongoing physiotherapy. This is a disease that affects young people: the average life span of patients is just 37 years. Cystic fibrosis causes glands to secrete large amounts of mucus, which obstructs the lungs. Bacteria then get trapped in the lungs, leading to repeated infections and blockages and causing irreversible lung damage. Lung transplants are a treatment measure, but they are not the cure. Cystic fibrosis exists in communities across Australia.

I want to share with you the story of a nine-year-old girl living in my electorate. Her name is Ellis. This week she has been in hospital, being treated for cystic fibrosis and related respiratory infections. Earlier this year, I was contacted by Ellis's grandfather, pleading for help for his granddaughter. Ellis has to undertake an hour and a half of physiotherapy every day and must take enzyme capsules with everything she eats. She takes antibiotics every day and spends around four weeks per year in the Adelaide Women's and Children's Hospital.

The drug known as Orkambi is a new treatment that is proven to improve lung function. Clinical trials have shown a reduction in lung damage by at least 40 per cent more than normal in sufferers of cystic fibrosis. It reduces incidents of chest infections and hospital stays. It treats symptoms of the disease and tackles the disease itself.

For a sufferer of cystic fibrosis, this drug can literally change their life. When I initially lodged this motion, the application to have Orkambi listed on the Pharmaceutical Benefits Scheme was still being assessed. On Friday 18 August the PBS advisory committee handed down its recommendation that this treatment not be added to the PBS. I am not necessarily here today to criticise the PBS advisory committee. I believe that the correct and proper oversight for which medicines are subsidised by the Commonwealth government is fundamental to our country's health system. However, it is my understanding that the efficacy and safety of Orkambi have long been established and that the primary reason for the rejection of the latest application was due to the cost of the drug being too high.

I have read various media reports that place the blame at the foot of the manufacturer and others that place the blame on the government. We should not play the blame game with children across the country while they continue to battle this terrible disease and while we can do something meaningful to assist that suffering—and we can do it quite quickly. Orkambi has recently been approved in Canada for children aged between six and 11 years, and 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 affordable access to the drug, but I am frustrated that it is taking so long.

I would like to acknowledge the work of the federal Minister for Health in supporting the process that saw the drug known as Kalydeco being included on the PBS earlier this year. Like Orkambi, Kalydeco is a lifesaving drug for young children suffering from cystic fibrosis. At that time, Minister Hunt was quoted as saying:

… we've been able to deliver the right outcome with Kalydeco, and I am very hopeful that given time, … that we can make real progress on Orkambi.

I would encourage the minister to reflect on these words and on the lives of children like Ellis.

Cystic fibrosis sufferers in Australia are calling for the minister to intervene and to begin negotiations with the pharmaceutical manufacturer, and today I lend my support to that call. I will continue to advocate on behalf of families across my electorate and across the country who live with this disease, and I urge our federal government to keep these children and young people at the forefront of their thoughts when making decisions so that a thousand Australians can have affordable access to this lifesaving medication. Thank you.

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