Wendy Askew (Tasmania, Liberal Party) Share this | Link to this | Hansard source

Today I have a personal story to convey, and it involves both my niece and her son. When she was four years old, my niece Sarah was diagnosed with type 1 diabetes. Her readings were hard to stabilise, and, at that time, her insulin was administered via regular injections throughout the day. Sarah was kept alive and healthy by six injections a day. She started school around the time she was diagnosed, and that involved her mother going to the school twice a day to take her readings and give her an insulin injection. As you can imagine, in the 30 years since then Sarah has seen many benefits from improvements in technology, from insulin pumps and continuous glucose monitors through to the many improvements in insulin types, particularly in the area of fast-acting insulins. Three years ago, Sarah's youngest son, Ollie, was diagnosed with type 1 diabetes at just 2½. He was too young to tell his parents how he was feeling, let alone understand the need to have his finger pricked or a monitor and pump attached to him. It was a really difficult time for their family.

Fiasp is a fast-acting insulin used by approximately 15,000 Australians with type 1 diabetes, and it is the most effective insulin for Sarah. It gives her flexibility in managing her diabetes and therefore in improving her quality of life, and Fiasp is the only insulin that Ollie, who is only five, has ever used. Taking Fiasp instead of a slower-acting insulin means Sarah and Ollie can eat almost straightaway. Without Fiasp, they would have to take their insulin dose 15 to 20 minutes before eating and then wait. Fiasp has helped this family manage meals better. Any parent knows how hard it is to tell a hungry child that they can't eat just yet. How does a child know they will be hungry in 20 minutes? When everyone else is eating, 20 minutes is a very long time for a child to wait. Type 1 diabetes is always there, but Sarah says Fiasp provides 'one small element of normality at mealtimes'.

There is no other comparative insulin option for Sarah and Ollie. Fiasp helps them to regulate their blood sugar level so they don't spike too early or crash later. As an adult, Sarah knows how to live with and manage her diabetes, but parenting a child with type 1 diabetes is another matter altogether. A diabetes diagnosis disrupts the natural impulsiveness of childhood. You must always be prepared and have a plan to deal with every potential scenario. Sarah is on constant alert for Ollie, making him wait for his pump to be removed before he jumps into the pool for a swim or runs into the ocean, taking finger pricks to measure blood sugar levels and responding with a jelly bean, a drink of juice or an insulin injection. 'It's constant interruptions to his day over and over again,' she says. Sarah has to be on alert for herself, too. She needs to make sure she always has supplies at hand and checks her blood sugar levels before she leaves the house to determine that she is okay to exercise, to eat and to drive. Sarah admits it can be relentless at times.

Why am I telling you about my family connection to this drug known as Fiasp? Because it was recently announced that Fiasp would be removed from the PBS on 1 April, leaving nearly 15,000 Australians, like Sarah and Ollie, facing a hike of $220 per script. They would be forced to find hundreds of extra dollars each month when Fiasp reverts to a private prescription or find an alternative insulin, none of which have the same profile as Fiasp. Last Friday, the health minister announced that access to Fiasp on the PBS would be extended by six months—great news for Sarah, Ollie and the thousands of other Australians living with type 1 diabetes. However, this extension is only for six months, or 12 scripts each for Sarah and Ollie, and it is under a supply-only arrangement to patients who already have a prescription on 1 April.

So what happens when 1 October rolls around? Sarah, Ollie and the other 15,000 Australians who use Fiasp deserve certainty about their future and their health. I don't want to simply accept my niece and great-nephew won't be able to access the medication that makes their lives easier, and I don't want to accept the situation for the thousands of Australians in the same position as Sarah and Ollie either. Sarah is one of almost 40,000 people who have already signed the change.org petition calling for Fiasp to be reinstated to the PBS. Already impacted by the increasing costs of living, with mortgages, energy prices, grocery prices and the cost of medical visits rising, to add an extra cost of $400-plus a month to those people is unpalatable. I call on Minister Butler to negotiate a solution and keep Fiasp on the PBS.