Rowan Holzberger (Forde, Australian Labor Party) Share this | Hansard source

I rise in support of the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. I just can't let pass that the member for New England mentioned 105 males born, but, he said, 'Sometimes'—in a good season—'you have more, sometimes less.' Anyway, he's left the chamber, so I don't feel the need to continue that.

When I was elected, I made a commitment in Forde to listen to the community, to fight for what I hear and to deliver on what the community wants. To that end, I came across a woman called Jess Short, who lives in Waterford West. Jess has a rare condition called osteopathia striata with cranial sclerosis. It is a rare disease. Jess is somebody who is a fierce advocate for people with that condition, but she is also a fierce advocate for people with rare diseases. As part of working with Jess, we held a community forum on rare diseases in Forde last week. From that, it has emerged how significant rare diseases are in our community. Even though each has a propensity in the community of about five in 10,000, collectively there's something like 7.8 per cent of the Australian population living with a rare disease, which means around 13½ thousand people in Forde.

I'd like to read out a bit about Jess. Jess was unofficially diagnosed when she was around 12 years old. When she later sought a formal diagnosis, she says that she was told she couldn't have children and that that advice was delivered without much empathy. Six weeks later, it was confirmed that she did in fact have the condition. Much of Jess's childhood was spent in and out of hospital, and, by the age of 18, she'd undergone more than 30 surgeries, including hernia surgery, jaw surgery, cleft palate repair and the removal of tonsils that had grown so large they affected her breathing. As Jess put it to me, with a bit of humour, 'Let's just say I've had a lot of anaesthetic.' Thirty surgeries before the age of 18! But what really struck me about Jess when we spoke wasn't just the number of surgeries; it was how hard it can be for people with rare diseases to navigate the health system. Jess says there is often no clear place to go. Because the condition is rare, patients can struggle to access a multidisciplinary team. She told me that there's very little transition care between childhood and adult services, meaning people can suddenly find themselves trying to navigate a system on their own.

Jess isn't interested in blaming anyone. What she wants is something better for the future. She wants to advocate for people with rare diseases. She knows children with the same condition who are not getting the help they need, and she wants to help connect families and push for a system that works. And that's exactly why we held a forum last week. It was very well attended by the community, and there was a lot of participation and discussion online and in emails I received. I very much want to take the opportunity during this debate to shout out to Jess Short, who is a remarkable individual and a fierce advocate for people with these conditions.

Arising out of the forum was an email I got last Friday, a couple of days after the forum, from another legend in our community, Kerri Meulman of Ormeau Hills. She is also a fierce advocate. I spoke to her today, and she's very happy for me to read out what she wrote to me. In this email, she advocates for the treatment she receives to be included on the PBS. There a couple of things I'll say on that at the end, but I think this really gives us an insight into what it means to have genetic testing to determine your condition. She said:

Thank you for the opportunity for the session! Unfortunately after treatment and dealing with the M1 carpark for 2hours trying to get to treatment this morning, I was unable to attend in person.

She said she started listening to it, though, and wanted to put what she thought in writing:

So thank you for the opportunity to have a voice!!

A little about my rare disease—I was diagnosed in 2023 with a rare cancer—gallbladder cancer, luckily found after going to make my regular blood donation and for them to tell me my iron levels were too low, go see my GP. Long story short, I have been through a couple of surgeries, oral chemotherapy, then more intensive chemotherapy and immunotherapy when the cancer spread in 2024 all through the public system. I do have private health but the call was taken that under the public system I would be in more of an umbrella situation.

Last year, my cancer metastasised again—and thanks to genomic sequencing, targeted treatment Enhertu was recommended as my best hope to beat this once and for all. Two pathways only were available—a clinical trial or private treatment. I tested for the clinical trial based out of Blacktown Hospital in Sydney, however my tumors were considered too small to qualify. Really I was a number to the trials people.

By the time my tumors had progressed further, there was no spot available on the trial.

So private was only available to me. Luckily for me, at a very young age, my financial advisor had set me up with a raft of insurances one of which I am now using to pay for the $10,000 it costs me for every second treatment, which I will have every three weeks for the next 2 years of my life. The treatment is working—I am 6 cycles in and there are no signs of tumors now. I literally had this news today, which is amazing and very exciting for someone told they had 12months to live.

But do you know, the same protein that Enhertu is targeting in breast cancer patients, if I had breast cancer, I would have access to this drug at $31.30 each cycle. The national breast cancer foundation advocated for this drug for the 1,700 patients each year who have this same sequencing and need of targeted treatment through Enhertu, for this drug to be on the PBS. The power of a powerful advocate for a recognised disease. But I am left out of this as a rare cancer battler.

Now Rare Cancers does what it can—rare cancers themselves as a combined cancer are the 3rd largest cancer group in Australia. But there are multitude of needs not one high profile group.

And nor do I have access to a cancer care nurse. I did under the public system at Gold Coast University Hospital—that cancer care nurse was there to answer questions but was a reactive support service, not an advocate or a support person for myself and my family. I have had to seek out, resource and upskill myself in medical terms and knowledge bases, as I am sure you are hearing, because there is really no one out there who can do it for me.

What stands out from Kerri Meulman's email is that, first, my contribution to this debate would be insignificantly small in comparison to the contribution that she is able to make to this debate, and so it is in her words that I think we sum up exactly what is going on here. The second is that, quite potentially, the private insurance which she has relied on to save her life would have been denied her—her condition would have been excluded—had insurance companies been able to use earlier test results to make that exclusion. The third thing that I'd say is that she's right to be advocating for the PBS. I feel amazingly privileged that I can be a voice for people in my community in this place. The Minister for Health and Ageing made the point today that, since we were elected, we've listed more than 400 new medicines on the PBS. Just as an example, he said that we listed a medication called Ultomiris this month, which treats a relatively rare condition called myasthenia gravis, which impacts only about 3,000 Australians but impacts those 3,000 Australians profoundly.

We as a society are living in a time where treatments are coming onto the market at an unprecedented pace, every single month, and these treatments are often specifically targeted to the genetic testing, which is identified through that test result. By the way, Kerri climbed Mount Kosciuszko last year to raise $2,600 for Cancer Australia. It is people like Kerri and Jess Short that inspire me to get up here and talk about what it means to protect their right to health insurance through the law.

The difference between going through genetic testing and going through a normal route of diagnosis—and there was a study done there—is, potentially, that going through the normal route is extremely frustrating. It can take up to five to seven years, and it can cost anywhere from $10,000 to $40,000. The alternative, through genetic testing, is that it can take weeks or, at most, months, and can cost anywhere from $1,000 to $7,000. Apart from the impact this has on the individual, the impact this has on the economy as a whole and on the productivity of the economy as well as the cost of the health system has got to be profound.

In the last three minutes of my contribution, I will come specifically to why this legislation is so important. In some ways, you'd think that it goes without saying that it should be illegal and unlawful for insurance companies to use genetic testing against somebody to deny cover. But the fact is, in the community, there is a perception that the insurance companies will do just that; I don't know where people get the idea that insurance companies are untrustworthy! It is essential that people have confidence that they can undertake getting that diagnosis without fear of being excluded from insurance cover. In the most severe way possible, criminalising it as an offence, not just making it a civil penalty, truly sends a message to insurance companies to do the right thing and, with that, to give people in the community confidence that they can get the cover they need.

It is through that process and philosophy that I have in Forde to listen to our community, to fight for our community and to deliver for our community—this is a great example of being able to identify an issue which is much bigger than I would have ever thought before. As Kerri said, cumulatively, rare cancers put together are the third-most common type of cancer. That rare diseases are not rare, even though it may affect five in 10,000 Australians—when you put it all together, there are probably 13,500 people in Forde alone who are suffering from a rare disease. It is by listening to the community and fighting for the community—and, I should say, doing what little I can to help people like Jess and Kerri fight—that we as a parliament can deliver. That's what this legislation does. It delivers certainty to people to go and get the diagnosis and undertake the testing that will potentially not just save their life but give them a quality of life they wouldn't have had otherwise. I commend the bill to the House.

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