Paul Fletcher (Bradfield, Liberal Party, Minister for Families and Social Services) Share this | Link to this | Hansard source

I rise today to speak about an instance of our system working to serve Australians in need. In October last year, at a street stall I was holding in West Pymble, I was approached by Mrs Vivienne Dimmick, who told me the story of her daughter Charlotte—or Charli, as she is known. Charli has cystic fibrosis as well as autism and an intellectual disability. Cystic fibrosis is a rare genetic disease that causes mucus to build up in the lungs and other organs, leading to infections, damage and respiratory failure. It affects over 1,200 people in Australia every year and it has very severe implications for the lifespan of children who suffer from it.

Mrs Dimmick told me about the drug Orkambi, which is life-changing for people who suffer from cystic fibrosis. But, at the time Mrs Dimmick met with me, Orkambi was not listed on the Pharmaceutical Benefits Scheme and it came with the prohibitively expensive price tag of $250,000. Mrs Dimmick had been campaigning vigorously for her daughter and for other Australian sufferers of cystic fibrosis when I met her, and she continued her campaign. After she raised her daughter's plight with me I wrote to the Minister for Health, asking that the Pharmaceutical Benefits Advisory Committee seek the earliest possible listing of Orkambi.

There was much other fine advocacy work done. Charli's older brother Max, who is 12, wrote me a beautiful letter, and he wrote to the health minister, talking about how important it was for Charli that Orkambi be listed on the PBS. So it was very pleasing that in August this year the Pharmaceutical Benefits Advisory Committee announced that it had reached an agreement with Vertex, the company that manufactures Orkambi, announcing that the drug would be available through the Pharmaceutical Benefits Scheme from 1 October this year and with the manufacturer granting compassionate access until then.

It is no exaggeration to say that this news is life-changing for Charli and her family. This drug will add 23 years of life expectancy to children who start treatment at the age of six and 18 years of life expectancy to those who start at 12. This is not only a wonderful outcome for Charli Dimmick but a wonderful outcome for so many other Australian sufferers of cystic fibrosis. It is an example of our system working as it should: to serve Australians in need.