Susan Templeman (Macquarie, Australian Labor Party) Share this | Link to this | Hansard source

Throughout the electorate of Macquarie, which I represent, there are families facing the challenges of cystic fibrosis. They've joined with more than 35,000 people to urge for a speeding-up of negotiations with the maker of a drug called Trikafta so that it can be available under the Pharmaceutical Benefits Scheme. Trikafta was approved in April by the Therapeutic Goods Administration, but it's not on the PBS.

Cystic fibrosis affects the lungs and digestive system, and there is no cure. When I met with Nettie Burke from Cystic Fibrosis Australia, she told me that Trikafta is being used overseas in more than 20 countries and can extend life expectancy by more than 30 years. But the drug currently costs Australian patients nearly $300,000 a year, so only some people in Australia can afford it.

Mark lives in South Windsor and has a two-year-old daughter who was diagnosed with CF when she was just five weeks old. Their typical routine involves daily intensive physiotherapy to clear her lungs; enzyme replacement capsules to aid digestion; and nebulisers and antibiotics to treat lung infections. They can't afford Trikafta. Maureen is the great-grandmother of a six-year-old boy with cystic fibrosis and his two-year-old brother is a carrier of the CF gene. She would like them to live longer, and Trikafta could help. Lucy, who is 25 years old, grew up in the Blue Mountains. She has university qualifications in science and lives with cystic fibrosis. She was diagnosed at two months old. Her daily routine involves 50 tablets, 56 puffers, five nebulisers, two hours of airway clearance, daily exercise and a careful diet—on top of her full-time job. What her routine doesn't include is Trikafta.

There is another chance for this remarkable treatment, which can have a huge impact on lung function, to be listed on the PBS this year. For the sake of these families and the more than 2,000 people over 12 for whom it's already been approved but is not within financial reach, I hope we see that.

The Hawkesbury is justifiably proud of its agricultural roots. The first colonial settlers planted crops along the river in 1794, saving the infant colony from starvation—and, of course, First Peoples recognised the bounty of the region long before. Hawkesbury Agricultural College, established in 1891 in Richmond, has been a key part of that agricultural history. The Hawkesbury campus of Western Sydney University has a big role now and going forward, especially for peri-urban agriculture. The WSU vision is for an agri-tech hub with a state-of-the-art greenhouse where industry and researchers can investigate food technology and land use management to develop a sustainable approach to peri-urban farming. We're talking high tech: developing adaptive drone technology and robotics for growing and logistics.

Building on the great work being done in the recently built giant greenhouse, which I was delighted to visit with my shadow minister for education a couple of years ago, the collaboration is there between industry and research. They will draw on the work already being done by the School of Science and at the Hawkesbury Institute for the Environment, which itself is doing world-leading work on climate change. This is an institute that was established when Labor was in government, and it looks at what rising CO2 levels mean for forestry, soils and agriculture industries, as well as native plants and animals, and how we can use technology to understand and better manage our most important natural and managed ecosystems.

The agri-tech hub is expected to generate more than $30 million of economic activity every year for the surrounding region. Jobs are part of this, including 1,300 jobs during construction and around 200 direct and indirect jobs once it's operational. These are jobs for a range of skills, from plumbers and engineers to environmental scientists and supply chain experts. Students at WSU will be able to learn in a work integrated environment so that they emerge with strong local industry knowledge and skills.

Even more than jobs and the ongoing learning, the agri-tech hub will provide a significant and ongoing supply of fresh produce to Western Sydney and greater New South Wales, greatly improving food security by being able to grow our own supplies here in quantity. This is a really exciting proposal, and I'm fully supportive of it. I hope that we're able to bring this vision to life. It will help us keep agriculture strong in the Hawkesbury.