George Christensen (Dawson, National Party) Share this | Hansard source

In recent days, a little six-year-old girl from Mackay called Maddie said, 'Mummy, when I grow up I want to have 100,000 baby girls.' Now, that's an innocent remark—the aspiration of a child—but painful for her mother to hear, because Maddie has cystic fibrosis. Maddie may not be able to fall pregnant and, depending on the conditions of her lungs at the time, she may not be able to carry a child. The sad reality is that Maddie may not live long enough even to have a family of her own.

The guarantee undertaken by Maddie's parents, Gary and Penne Kaddatz, to keep their daughter healthy and functioning is one that we can scarcely comprehend. Another Mackay family, the Brazils, have a 12-year-old daughter, Ashlin, who battles the same debilitating genetic disorder. It affects the lungs and the digestive and reproductive systems. The Brazils have been through a very rough couple of months. Ashlin contracted an infection that significantly reduced her lung function and she spent a month in hospital.

For both of these families, the possible listing of the drug treatment Orkambi on the Pharmaceutical Benefits Scheme represents a hope that they are too scared to believe in because it represents the possibility of relief from the daily battle and ongoing pain they endure to keep their girls alive and well. I rise today to give a voice to these two mothers—Penne Kaddatz and Michelle Brazil—and to their families to explain their struggles so that others can understand how important it is for them to be able to access an effective medication.

Six-year-old Maddie's daily treatment consists of the following, when she is healthy: 20-minute nebuliser sessions, morning and night, with different medications to loosen mucous; Ventolin twice daily to prevent irritation and inflammation; and vibration vest sessions for 20 minutes a day. She must take enzymes, probiotics, vitamins and salt replacement tablets, and have extra fat added to every meal because maintaining a healthy weight is a constant battle. Every day, Maddie's parents weigh her to see if she is on track. Every cough or sniff they hear from Maddie makes them fear that there might be a lung infection. Every cough from another person makes them want to run a mile to protect their child. They live with what seems to be a ticking time bomb which leaves them in a constant state of fear and panic. They are grateful that their daughter has fared well so far with the condition that she has, but the progressive reality of living with cystic fibrosis is that every infection leaves their child weakened, and sufferers have a life expectancy of 37 years.

They need only to look to the experience of their good friends, the Brazils, to see what life might be like for Maddie in a few years. Ashlin has experienced her worst year to date with cystic fibrosis. Recently, instead of enjoying school holidays, she spent a month in hospital in Mackay and then had to go down to Brisbane battling the condition. Ashlin undertakes airway clearance treatments for up to two hours every single day, and she takes 40 pills just to keep her system functioning. Think of it—40 different pills every day. Despite all she goes through, her mother, Michelle, said her daughter faces every day with pluck and resilience. She said, of children with cystic fibrosis: 'They laugh louder. They hug harder. They play longer. They fight more than they should ever have to.' Both parents hope for the day that a cure is found for cystic fibrosis. Until then, though, they must battle every day against infections which could leave their children with significant and irreversible lung damage. Most deaths from cystic fibrosis are from lung complications or lung failure.

If it were listed on the Pharmaceutical Benefits Scheme, the drug Orkambi would be made available to 1,000 Australians aged 12 and over, and Ashlin is one of them. It has the potential to reduce the amount of medication she needs to take, and it could slow the deterioration of her lungs, which I am sad to say is already occurring. Maddie is too young to be included right now, but it would provide her parents with hope for the future. Even at her young age, her parents can see lung deterioration on the CT scans that they get for their daughter. It can improve the quality and quantity of the lives of these young girls. It could make the difference between life and death.

The current state of play is that the independent Pharmaceutical Benefits Advisory Committee has asked for more information or further evidence of the effectiveness of Orkambi. I hope the company concerned can fulfil any and every requirement that the advisory committee has as soon as possible, because this government has a solid record of funding all drugs recommended by that body, and I call for parties involved to expedite the review. (Time expired)

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