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

During the last Senate estimates I was privilege to host two events in this place for Cystic Fibrosis Australia. CF Australia is a not-for-profit organisation supporting people with cystic fibrosis and their families.

The visit to parliament coincided with CF Australia's annual fundraising drive, 65 Roses, '65 roses' being the play on words devised by a young child who couldn't pronounce 'cystic fibrosis'. This year there was an associated policy campaign. People with CF and their families met with politicians of all persuasions, including health minister Dutton, to lobby for PBS access to the CF treatment, Kalydeco. Kalydeco currently costs over $300,000 a year, and the Pharmaceutical Benefits Advisory Committee are locked in protracted negotiations with Vertex around the price.

The treatment, scientifically known as VX-770, corrects the genetic mutation for around five per cent of people with CF—around two hundred people in Australia. It switches off the genetic defect, stopping the degradation of the lungs and adding decades to life expectancy.

VX-770 has been approved by the Pharmaceutical Benefits Advisory Committee, but the government and the provider, Vertex, are at loggerheads over the price. Labor's position is that the government should be able to find funds from savings to pay for Kalydeco from within the PBS system, particularly from price disclosure and generic medicines.

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 99 per cent of people with CF, and there is further research in the pipeline. Kalydeco is already available in the US, Canada, the UK and many European countries. Approximately 90 per cent of eligible patients in the world outside Australia have access to Kalydeco.

The visit to parliament brought people with CF and their families face to face with politicians to share their struggles of caring for someone with CF and to share the benefits that Kalydeco has brought to people with CF who are currently on the extended compassionate access program with Vertex. At the evening function, Genevieve, a young woman from South Australia, gave an address on the change in her life since having access to Kalydeco. Genevieve has recovering lung capacity, is able to study and is no longer just planning for five years ahead but for her lifetime. She mentioned that she is now actually thinking, for the first time in her life, about having superannuation. She spends less than five minutes a day on treatment rather than the more than two hours a day she spent before access to Kalydeco.

That day I also hosted a young man, formerly of Launceston, who now lives in Brisbane with his wife who has CF. Cameron is Jess's carer and came to Canberra for Jess because she was too unwell to make the trip. Jess would not benefit from the sole use of VX-770, but Cameron has hope that she would benefit from the combination of VX-770 and VX-809. In my address to the CF Australia event in May, I included some of Jess's words from her blog. She describes Cameron's unselfishness in becoming her full-time carer: 'Whenever I need it, for the entire two to four weeks, Cameron becomes my nurse, doctor, pharmacist, physiotherapist, dietician, cook and cleaner. The most amazing thing of all, however, isn't that he does all of this now and then for a few weeks. It is that he chooses this life even though he knows there will be many more weeks like this to come.'

Jess's story highlights the constant treatment she, like everyone with CF, has to endure. It is also an insight into the vital role of carers in our community. I was humbled by Cameron's dedication and support, as well as all of the carers and families I met that day. Their stories highlight the enormous role of carers in our community and the enormous burden they take on to care for their loved one, which frees up resources in our health system—a health system that is in desperate need of support, not the $50 billion of cuts slated by this Abbott Liberal government.

I thank all of the people with CF and their families who came to Canberra to lobby for access to Kalydeco. I urge Minister Dutton to do everything in his power to end the negotiations and achieve a successful outcome, and I urge Vertex, the suppliers of Kalydeco, to do everything in its power to end the negotiations with a successful outcome. I urge people with CF and their families: never lose hope, keep banging on the doors of politicians, and keep up the fight; you will succeed.