Lisa Chesters (Bendigo, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to raise the case of two constituents living in my electorate—27-year-old Brett Bell and six-year-old Amelia McCrohan—and their families. Both Brett and Amelia have a rare form of cystic fibrosis. Both spoke to me about their wishes and their calls on the government to work with the manufacturer of the very important life-saving drug Kalydeco. Kalydeco was listed on the PBS in November last year, but it was listed with quite strict recommendations. Because of those recommendations, it is still not available in this country. I support the calls for the government to reinvest funding that has been made available through price disclosure in the PBS. This funding that has been made available to the government through price disclosure should go towards funding new medicines such as Kalydeco.

Kalydeco does radically change people's lives. That has been demonstrated in the United States and countries in Europe. All Amelia and Brett are calling for is for Australia to have the same requirements for the drug Kalydeco as those countries do. What does it mean for young Amelia, who is six years old? This drug could mean, if she starts taking it now, that she could live life like a normal six-year-old and could go on to live a long life. Right now, the life expectancy for someone with cystic fibrosis is low. For some, it is to their early teens. For some, it is to their late 20s. That is it. They have a life where, once they hit their late teens, they start to get quite ill. It must be so frustrating for Amelia's parents to know that there is a drug available in other countries that could help their little girl. All they want is for her to live a good life. Knowing that this drug is available in other countries and not in Australia is quite frustrating for them. So I call on the health minister, Peter Dutton, to work with Vertex and PBAC to avoid getting bogged down in price negotiations and bring about the listing and delivery of this drug KALYDECO so that the sufferers of this particular form of cystic fibrosis can receive the support that they need.