House debates

Monday, 23 March 2026

Bills

Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025; Second Reading

7:12 pm

Photo of Julian HillJulian Hill (Bruce, Australian Labor Party, Assistant Minister for Citizenship, Customs and Multicultural Affairs) Share this | Hansard source

and determination. She batted away the tricky questions. She was exemplary.

It's because of her personal experience. My daughter almost died in 2017, when we were in Sri Lanka. Eventually, we figured out she had a 64-centimetre blood clot in her leg. She was in the ICU, and they saved her. We worked out, through tests and interrogation, that it was a combination of an off-label contraceptive pill and an undetected minor genetic mutation—a Factor V Leiden, which is very common—and, unfortunately, the same GP who put her on the pill also, at the same consultation, knew she was going on long-haul flights the next week to Europe, so it was a triple whammy. She's okay now, but there's lifelong damage. She's on blood thinners—a pretty heavy dose—for the rest of her life, high-risk pregnancy and all that stuff, and she pays through the nose for travel insurance, health insurance and all the rest of it.

I went to get tested, which was part of the advice after this happened, and I was absolutely floored. I went to the GP, who referred me to the haematologist, I think it was, and he said: 'Well, don't get tested. It'll stuff up all your insurance.' I was stunned by that, which first got me to understand this issue. The risk, he said, was for my life insurance, my income protection insurance and potentially even travel insurance. When my dad died when I was four, it was only because he had life insurance that the family survived. Mum could pay off the house. We didn't have much but we had the house.

Successive governments have been promoting genetic testing and educating people on genetic health, and the advances in modern medicine are incredible. It is the way of the future. Part of investing in medical research is empowering individuals and encouraging them to get genetically tested where they can, where they have the opportunity, where they can afford it and so on. Deputy Speaker Freelander, as a senior medical professional, will know this far better than the rest of us. Increasingly, personalised medicine targeting interventions for disease or prevention based on your genetic heritage, your genetic lottery in life, is the way of the future. But we had this peculiar situation where on one hand we encouraged that yet, on the other hand, the insurance systems settings actively discriminated against some people who discovered through no fault of their own, not through a lifestyle decision, not through a personal choice that they'd made—just the lottery of life; that's just genetics; you can't change it—that they were then discriminated against.

It was through a Commonwealth funded research project that Dr Tiller found empirically that consumers were putting off genetic testing because they were worried they would be denied insurance. I understand that; it was my experience. Jane said in an article a long time ago, 'Every time someone considers whether they want to have a genetic test or wants to be part of genetic research, we have to tell them the life insurance implications if they're signing up to that.' We found that the majority of people across all of those stakeholder groups believed that legislation was required. And she was right. This full legislative ban, which we've been arguing for, will bring Australia into line with, say, Canada, which made the switch in 2017, and the world didn't end there.

The government wants all Australians to take control of their health. I say to people: if you have the opportunity to get to do the testing, people should feel free to do that and feel safe to do that or to participate in medical research, as the previous speaker said, without them thinking, 'It's going to deny me life insurance cover or cost me forever.' I don't want any Australian to have to regret understanding their own heritage and health and trying to do things that enable them to live a longer, happier, healthier life. My daughter in that article said she argued very strongly for this change, and I know she's very pleased about it. She still struggles to get travel insurance when she goes overseas and so on, but knows from our family story the importance of it.

On a related matter, I also just want to remark on the other part of her story, which does have implications potentially for insurance if things go wrong, which is around the contraceptive pill prescribing. There's been a series of recent moves by state governments across the country to allow pharmacists to prescribe contraceptive pills. It's risky, but it also may raise insurance concerns, as I said, when things go wrong—and they will. I just want to state my view clearly. As contraceptive pills pose extra risks for people with genetic conditions like my daughter's, state governments can decide, are deciding, to ignore medical advice and ignore the advice of the TGA if they wish and allow pharmacists to prescribe contraceptive pills. They can do that. The pharmacy lobby has long advocated this, and I've got a lot of time for our community pharmacy model. I have an enormous amount of time for the skill and professionalism and education of our community pharmacists and for the Pharmacy Guild for the work that they do. But I do disagree on this aspect firmly.

My home state of Victoria is the latest state to announce that they will allow this. I fear that the rest, the last holdouts, will fall like dominoes soon. Since Victoria announced it, because people do the Google search and realise I've spoken on these issues for a long time, I've been contacted by many GPs, advocates and others who are concerned. There's been some media reporting, but I just want to record very clearly so there's no misunderstanding. I've made no public comments on this but, given this bill and the interest, I just want to read into Hansard my response, which I sent to GP Dr Stephanie Hammond, which succinctly explains my view—don't be scared; it's one page. It said: 'Thank you for your letter and for taking the time to raise this. I was also surprised, to say the least, to see this announcement by a state government against the advice of relevant medical colleges. I spent a lot of time some years ago after my daughter almost died of a DVT connected to an off-label prescription of Diane-35 researching these issues. While I'm not a medical professional, I did read a lot of journal articles and engaged widely to advocate for various policy and system improvements, some of which we got. There is a good case for repeat prescriptions to be issued by pharmacists for appropriate on-label contraceptive medications once a patient is stable on a drug, possibly with periodic clinical oversight. But having asked some basic questions, I share your concern about aspects of the model as announced. One broad issue is that there are many other options for contraception aside from the pill, both for women and men. Many of these are less risky than women's contraceptive pills, and it's not clear whether pharmacists will or could be trained to provide a full consultation on contraceptive options in an appropriate private room setting. I understand there are some overseas models whereby pharmacists can prescribe, but in a multidisciplinary setting and where a script that is issued, then it is filled elsewhere to avoid any commercial benefit or conflict of interest through profiting from dispensing a medication. Complications are more likely on most medications—not all, of course, but most—to arise in the first few weeks or months of taking a pill, a new medication, and screening for risk factors other than blood pressure, such as genetic and family history and weight and so on would seem sensible. Going to a pharmacy for a first prescription for a contraceptive pill seems a terribly risky thing to do and I'd strongly suggest to anyone in my life who asked, woman or man, to go and see a doctor for contraceptive advice and an initial prescription of the pill, if that is the preferred option. Thank you again for raising this.'

I do make that distinction: for appropriate pills once there has been some clinical consultation, I think there's an enormously strong case for repeat prescriptions to be available through pharmacists. It's convenient; it can save pressure on the medical system and so on. But my concern is deeply held and genuine, and I know it's held by other colleagues, including Dr Michelle Ananda-Rajah, who is a member of this House and who is now a senator for the state of Victoria, has made public comments as well.

I note the Victorian government has doubled down on its decision to allow first-time prescriptions. I just want to keep emphasising that distinction. I think some of their plan has a lot of merit, but this first-time prescription thing is risky and it's dangerous. My old, dear friend—actually, I shouldn't call her old, because it means I'm old, and we've just been around a long time—of 30 years, Premier Jacinta Allan, in response to media criticism in which my letter to Dr Stefanie Hammond had appeared in the media—it's not a comment that I gave—stated:

I'm not going to let vested interests and old-fashioned ways of thinking—and middle-aged white men—decide when and where women should get the healthcare they need.

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