Anne Urquhart (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

Tonight I rise to speak about cystic fibrosis, which is a subject that I have spoken about a lot in this place. It is the most common life- threatening, recessive and genetic condition affecting young people in Australia.

It is a terrible disease that causes a thick, sticky mucus to form within the lungs, airways and digestive system. The mucus impairs the digestive functions of the pancreas and traps bacteria in the lungs, resulting in recurrent infections and irreversible damage.

From birth, a person with cystic fibrosis undergoes constant medical treatments and physiotherapy, often for hours a day. For well over a year, the cystic fibrosis community in Australia has been lobbying the government to conclude negotiations with pharmaceutical company Vertex and to list the drug Kalydeco on the Pharmaceutical Benefits Scheme.

Medical experts consider Kalydeco to be the most important development in the treatment of CF since the discovery of the CF gene in 1989. The treatment, scientifically known as VX-770, corrects the genetic mutation for around five per cent of people with CF in Australia, which is around 200 people.

It works by turning off the genetic defect that causes cystic fibrosis, allowing the body to break down and drain mucus into the lungs and digestive system. What is exciting about VX-770 is its potential future combination with partner drug, VX-809.

When used together, these two drugs could assist around 94 per cent of people with CF, around 33,000 people worldwide. Therefore the two treatments, VX-770 alone, and VX-770 plus VX-809, could correct the genetic mutation for almost 90 per cent of people with CF. And there is further research in the pipeline.

Kalydeco costs around $300,000 a year and only a small number of Australians have had access to Vertex's compassionate access program. But, finally, last month, the government announced that Kalydeco was to be listed on the PBS. From next week, the drug will be available for all CF patients with the G551D mutation, aged six years and older, for as long as needed.

These Australians will finally join the 90 per cent of eligible patients outside Australia who already have access to Kalydeco. Critically, the minister's office have informed me that if eligible sufferers have difficulty gaining or maintaining access to Kalydeco, then he wants to know and will find a solution.

So I encourage the CF Australia community to take up this opportunity from the minister. If there are concerns or difficulties with access, get in touch with him. However, from your lobbying efforts over the past year, I am confident that any concerns will quickly be raised.

In May this year I co-hosted two events in Parliament House for Cystic Fibrosis Australia, to highlight the need for Kalydeco to be listed on the PBS. The visit brought people with CF and their families face to face with politicians. Stories were shared of the struggles of caring for someone with CF, while those who were on the compassionate access program shared the benefits to their life from taking Kalydeco. For example, Genevieve, from South Australia, shared the fact that she now spends less than five minutes a day on treatment, compared to over two hours a day before taking the drug. Her lung capacity is recovering, she is able to concentrate on her studies and she is no longer just planning for five years ahead but for her lifetime. The listing of Kalydeco on the PBS now gives opportunities to hundreds of other young Australians to plan for their life, not just for five years.

I congratulate all of the people with CF, and their families, who have lobbied for the PBS listing of Kalydeco. Congratulations to Michelle Skinner, at Cystic Fibrosis Australia, and your team that continues to do such tremendous work in every state and territory. It is my hope that when the next drug combination comes to the PBAC the work undertaken to list Kalydeco will ensure a more truncated negotiation, because every day a CF sufferer is without treatment is another day of irreversible damage to their lungs and other vital organs and another day that they are not participating fully in their community. I urge people with CF and their families to use this experience as an inspiration. Your persistence and courage has paid off and will pay off in future. I urge you to never stop your campaigning and never stop sharing your stories of success and of pain. You will succeed in your struggle against this disease if you continue to be persistent and fight for your cause.