Dr ALY: The National Health Amendment (Enhancing the Pharmaceutical Benefits Scheme) Bill 2021 is the product of some fairly lengthy negotiations between the pharmaceutical industry and the government. What we have before us with this bill, as the member for Hindmarsh and shadow minister for health spoke to earlier, is something that can have bipartisan support. Certainly we on this side of the chamber support the bill and where it has landed in these negotiations. The enhancements in the bill are estimated to generate savings to the PBS of around $1.9 billion over the life of the agreement. In particular, Labor welcomes the reinvestment of those savings into the PBS to enable the supply of new life-altering and life-saving medicines in Australia. The bill will also, quite importantly, address the issue of medicines that have not seen price reductions through catch-up statutory price reductions and will see measures to ensure the supply of medicines is protected through stockholding and obligations.
I want to take some time today to talk about some life-saving medications in Australia and to specifically talk about the cases that have been brought to me as the member for Cowan and to express my advocacy for some of those life-saving medications to be included in the PBS. In relation to the $1.9 billion in savings over the life of this agreement, if consideration is given to reinvesting those savings into looking at listing new life-saving medicines, perhaps the government might consider the cases that I am bringing forward here for Cowan residents and their access to life-saving medication.
The previous speaker talked about constituents coming into our offices and telling us their stories of access to medicines, whether for themselves or for members of their family. In some of the cases that I will talk about, it is for children. He said that it's great when they can see a light at the end of the tunnel. Unfortunately, for the cases that I present here today, there is no light at the end of the tunnel. I pay heed to the parents of the children living with chronic health conditions, and the adults who are doing so, who continue to advocate very strongly for changes to the PBS in order to ensure that they do have access to the medicines that prolong their life, that give them a better quality of life or that are a cure for their chronic diseases.
Last week in this House, the member for Macarthur presented a petition signed by thousands of people relating to a drug called Trikafta, which is a cystic fibrosis drug. I have a very good relationship with the cystic fibrosis community in Cowan and throughout Western Australia, and I specifically want to pay heed to Taryn Barrett, who is a very vocal advocate for people with cystic fibrosis. Her son, Connor, has cystic fibrosis. I've met Taryn and Connor on a few occasions and can't speak highly enough of Taryn's advocacy.
On the drug Trikafta, the pharmaceutical company that developed Trikafta, Vertex Pharmaceuticals, applied to the PBS to make it available for Australian sufferers of cystic fibrosis. Currently, the drug costs Australian patients around $300,000 a year. I don't know anyone who can afford $300,000 a year on a life-saving drug to keep their child alive, to give their child a quality of life and to prolong their child's life. Going through my Rolodex of friends, acquaintances and people I know, I cannot name a single person who can afford $300,000 a year to spend on a drug like Trikafta, but that's how much it's costing Australians living with cystic fibrosis at the moment.
Vertex applied to the PBS to have Trikafta listed. The PBS made it available only for people with a certain mutation of cystic fibrosis. The pharmaceutical company Vertex hasn't accepted that recommendation, because they argue it would actually exclude 80 per cent of cystic fibrosis sufferers. Taryn Barrett, who I mentioned earlier, is a WA woman and an advocate for people with cystic fibrosis. Her son, Connor, has cystic fibrosis. She said that there were almost 400 patients with the specific mutation who would have benefited from Trikafta going on to the PBS, who could receive help from Trikafta going on there. But there are 1,800 patients in Australia, including her son, who would miss out. In other words, the decision by the PBAC to recommend that Trikafta only be available to cystic fibrosis patients with a specific gene mutation would help 400 patients but would mean that 1,800 patients would miss out.
What does that mean for someone like Connor, and what does that mean for someone like Taryn, his mum? Taryn says it means that people are getting irreversible damage and people are dying, and it's not acceptable in a country like Australia. A treatment like Trikafta would mean that Connor would be able to grow old. Currently, his life expectancy is around 38 years.
Another of my constituents, who I was honoured enough to meet at a cystic fibrosis fundraiser and who I've become good friends with, Adam D'Aloia, is an adult who has lived with cystic fibrosis all his life. Through him I've learned so much about how cystic fibrosis affects the quality of life of those who suffer from it. Adam himself was the recipient of a double lung transplant and, because of that transplant, has been able to continue surviving, basically.
So Trikafta is one drug that I would hope, with the savings to the PBS and the measures to be brought about by this bill, we could look at funding, putting onto the PBS and making available to sufferers of cystic fibrosis, be they adults or be they children, to prolong their lives and give them a better quality of life. They deserve this. Cystic fibrosis is a terrible, terrible condition. It disrupts life. It disrupts work. It is so disruptive and so intrusive into an individual's life. Anything that we can do to improve the quality of life, the wellbeing and the longevity of people living with cystic fibrosis, we should do our utmost.
There is a second issue that I want to speak about. I hope this bill may give that light at the end of the tunnel for those who are living with type 1 diabetes and who do not have access to continuous glucose monitors. Earlier this year I met with Madison Lee, who lives in my electorate. Madison's brother had type 1 diabetes and tragically passed away in his sleep as a result of nocturnal hypoglycaemia. Madison's brother was just 24 years old, and, at 24, he was no longer eligible for a continuous glucose monitor. If Madison's brother had retained continuing eligibility and access to a continuous glucose monitor it would have saved his life. He would be alive today. The fact is that for someone who is 24 years old—he was an apprentice, so he wasn't on a high income—the thousands of dollars it costs to get access to a continuous glucose monitor is prohibitive. There are so many young people in their 20s who are living with type 1 diabetes and are no longer eligible for continuous glucose monitors who are putting their lives at risk because they can become eligible for a CGM, a continuous glucose monitor, if they have are hospitalised with a hypoglycaemic incident. So many of them are putting their lives at risk in order to have access to those monitors, which can save their lives.
I also met with a constituent, Mark Smith, who's been living with type 1 diabetes for 34 years. He came to see me because, like 60 per cent of people living with type 1 diabetes, he does not have access to life-saving and life-changing CGM technology. He's spending thousands of dollars a year to access CGM, and it's putting a strain on him, it's putting a strain on his family, it's putting a strain on his finances. It doesn't have to be that way.
Larissa, another constituent who also suffers from type 1 diabetes, is faced with costs of around $6,600 a year for a CGM, and she simply can't afford to keep up the cost of the continuous glucose monitor. She says, 'I am now in a crazy situation where if I choose to work a little bit less I will actually be financially better off because the burden of the continuous glucose monitor or flash glucose monitor would be subsidised.' Larissa wants to work, she wants to lead a normal life, she wants to contribute and work full-time, but doing so comes at a cost for her—that cost is the cost of having to fully subsidise, fully pay for, the continuous glucose monitor, which she simply can't afford.
I've talked about two examples—Trikafta and continuous glucose monitors. I know that every person in this House has heard stories from the families of individuals and individuals who have been living with some form of chronic illness or chronic disease who are struggling to pay for the medications they need. As the previous member said, we are incredibly fortunate in this country to have a PBS and to be able to subsidise some of those important medications for people to ensure their quality of living, to give them a better life, to give them a longer life and, hopefully, to cure their illness, whatever that illness might be.
I stand here because I want to support this bill. I think it is a good bill. As the member for Hindmarsh, the shadow minister for health, said, Labor does support this bill. We want our PBS to be better. But we also want more medications listed on the PBS for people for whom access to those medications would literally mean life or death, better quality of life and more longevity.
In closing, I support this bill, I support the measures that are contained in this bill. When considering the $1.9 billion of savings over the life of this agreement I urge the government to consider the medication that I mentioned here today, Trikafta, and extending the eligibility for the continuous glucose monitors, access to which will help to prevent avoidable deaths from type 1 diabetes. In the case of Trikafta, for someone like Connor to be able to live a long and healthy life means the world. It means the world to him, it means the world to his parents, it means the world to his community and it means the world to me too. I want to see Connor grow up. I want to see him have grandkids. I might not be alive by the time he has grandkids—and hopefully I'll get grandkids before he has grandkids!—but I want that for him and I want that for Taryn and Connor's family. I know that every member here wants that for every one of their constituents, too.