Daniel Mulino:
Well, thank you very much for all being here today. I’m really pleased and proud to be here today to be at the announcement of a really important policy. I’m about to go into the chamber after this press conference to introduce a bill that will ban the use of negative genetic test results in life insurance.
Before getting into that, I just want to make a couple of brief acknowledgements. I want to acknowledge my predecessor, Stephen Jones, for the extensive work that he undertook in this area. I want to obviously acknowledge that there are many, many MPs behind me, which reflects the fact that this has been, for a long time, a measure that has had support right across this parliament. I’ll just mention, hopefully, all people behind me, but if not, I apologise.
I do want to acknowledge Rebecca White, who’s the Assistant Minister for Health, and she’ll make a few comments after me. I want to acknowledge Deb O’Neill who was chair of the PJC – which as a very significant committee in this parliament has for a long time advocated for reform in this area – and a number of MPs, Ged Kearney, Josh Byrnes, Mike Freelander, Louise Miller‑Frost and others on the government side who for a long time have been championing this reform. I want to acknowledge Pat Conaghan from the Opposition, who has been working very constructively on this measure. He’s not able to be here today, but I wish that he could have been here.
I want to acknowledge that there are many members of the crossbench here who have been championing this. Senator David Pocock, Monique Ryan and Zali Steggall, Allegra Spender, Helen Haines, Sophie Scamps, and I hope I’ve mentioned everybody, but there are many people on the crossbench who have been working on this measure, and Jordon Steele‑John is here and the Greens have also been working on this. I think it is a great example of a measure which has seen members of the parliament come together constructively.
I also want to acknowledge Jane Tiller, who is here. Jane has been advocating for this in the public policy realm, but also in her very rigorous and world‑leading academic work for a long period of time. And Christine Cupitt is here from CALI, the life insurance peak body, and there are others here who have worked with them and will say a few words later on after I finish.
This is a really important measure because we know that genetic testing has incredible potential to alert people to medical risks in very early way, but it will help them to detect and to seek early treatment for conditions that will be much better for their health in the long run. We want people to take advantage of this very beneficial medical treatment.
We do know at the moment that a number of people are not taking genetic tests because they are concerned about the impact that those test results might have on their life insurance. So, it is really important that we stop that deterrence occurring by ensuring people are aware that if they have a genetic test and the results of that are adverse, that that will not impact on their life insurance and that they can then seek early treatment for that. That will be something that will help that individual considerably and it will also be something that will help our broader health system, by taking advantage of a very important technology.
Can I just finish by saying that a number of stakeholders, including Jane and a lot of colleagues that she’s worked with and the industry, have worked very constructively with the government to seek a solution that I think is a very sensible outcome. I think this is a very good example of public policy development where everybody has come together and where we’ve achieved an outcome that is a very, very significant step forward.
This policy will apply prospectively to all insurance policies made after this point. I will work constructively with the sector to work with them to see how people who have policies in place can seek to ensure that if they have had genetic tests, they can work with their insurers to ensure that that is reflected appropriately.
So, thank you all for coming today for a really important policy announcement, which is about to be reflected in the chamber. And I now hand over to the Assistant Minister, Rebecca White.
Rebecca White:
Thank you very much, Dan. It’s testament, I think, to the strength of work that’s been done that we have so many people standing here in support of this legislation. We all want Australians to have access to the tools they need to live long and healthy lives, and genetic testing is part of that. It’s about making sure people have access to information that can better support them with diagnosis and treatment and to help manage conditions such as cancer.
It is really great to be able to stand in support of this legislation with the support of parliamentarians from across the chamber because it illustrates the work that’s gone into consulting around this measure.
It also illustrates how more significant genetic testing is becoming in Australia. Our government last year subsidised 600,000 genetic and genomic tests. They were funded under the MBS. We have seen an increase of 85 per cent in genetic testing over the last 5 years. So, we know that this is being used more and we don’t want Australians to not have access to the right tools to manage their health care because they are worried about losing their coverage.
I’m very pleased to be standing here to support Dan Mulino and the work that he has been doing because this will save lives. It will help Australians better manage their health outcomes. It will help Australians and their families to live longer and better lives and we thank everybody who’s been involved in making this possible.
Jane Tiller:
Hi. I’m Dr Jane Tiller from Monash University, and I have been working on this for almost a decade. It is really, really wonderful to stand here today and to see that culmination of the work. And that work has been a really big group effort. And that’s come from people across the sector, from clinicians, from researchers, from the patients who are affected by this, the general public – there’s been a huge outpouring in consultation from the general public – from backbenchers, from ministers, from the crossbench, from the Opposition. Just a huge amount of work that’s been done to bring it to this point and this will absolutely save lives as the Assistant Minister has said.
This is clear that people are not taking testing up. There are still people who are waiting for this bill to pass before they have a genetic test that could save their life. And we have someone here who will tell you about how that impacts their particular community. But I just wanted to say thank you to everybody who has supported this, who’s moved it forward and who’s really making a difference to people today, to all the people who have supported us both in and out of Parliament House.
I want to echo the comments that were made by the minister around the prospectivity of this bill. This will, obviously, be excellent going forward for anyone who’s taking out cover and I echo that call on the industry to work towards a solution where we can look at what happens for people who have current cover that might be affected by this and how that solution can be reached as well.
I’m going to introduce Robyn, who’s behind here. Robyn is from Inherited Cancers Australia and is affected as a person with a genetic mutation and has benefited from that testing and will tell you about her community and how this affected them.
Robyn Smith:
Thank you, Jane, and thank you to everyone here. Good morning. My name is Robyn. I work at Inherited Cancers Australia, and I’m also just a human who has a gene mutation that predisposes me to cancer. It was very exciting this morning to hear about this bill that’s just going to positively impact everyone in the inherited cancers community. So, that’s 100 per cent of the people that we support as a charity.
We’ve heard and we’ve seen the impact that genetic insurance discrimination can have on people who are undertaking genetic testing and we know that it can be a deterrent to people who want to undertake genetic testing.
This bill is such a positive step forward in prevention and proactive goals. Removing barriers – as Jane said – and ensuring more people can undertake genetic testing is amazing. This will mean that more people will be undertaking genetic testing and it means that more people will have the information that they need to manage complex health decisions, and it also means these people will have less worries about the financial insurance limitations.
On a personal note, today is 7 years since my mum passed away of ovarian cancer and she had a gene mutation that predisposed her to developing that cancer. She undertook genetic testing and that gave her really valuable information about that cancer, but it also gave us, as a family, information about potentially our risk and how we could manage our risk. So, it was an opportunity for us for prevention.
When we were undertaking genetic testing in our family, there was no protection. So, I’m really excited today to be able to bring it forward and, you know, think about my kids who might be undertaking genetic testing in the future and also the tens of thousands of people that undertake genetic testing every year to know that there will be better protections for those people. As Jane said, I think this new bill will be life‑changing for many. Thank you.
Christine Cupitt:
My name is Christine Cupitt. I’m the CEO of the Council of Australian Life Insurers. Introducing this legislation today is a milestone for Australians and their families. We’ve always said that this legislation is good for the community, it’s good for government and it’s good for life insurers too. Life insurers are here to provide people with the protection and certainty they need on their best and worst days and we recognise that access to genetic information and screening is an important way for them to achieve peace of mind about their future. We want people to be able to make informed decisions about their future so that they can proactively manage their health.
It’s never been a question that someone undertaking genetic testing would lose cover, but we accept and understand that some people were worried about their ability to apply for cover in the future. So we want to take that uncertainty away and support the government introducing this legislation.
Of course, this is a very rapidly moving area of health and research, so we’re very pleased to see the legislation enshrine a 5‑year review to make sure that the reforms keep pace with changes in genetic testing and genetic science. But ultimately, we are really proud to stand here and support the introduction of this legislation and we look forward to playing our part in making sure that people can have the peace of mind they need to live in the most healthy, confident and secure way.
Mulino:
Thank you. Before inviting questions, I might also acknowledge Ged Kearney, who’s here. She was an assistant minister in the previous term who worked in this area and has been a longstanding champion.
Journalist:
I have some questions. Why are people – and this can go to anyone who is comfortable to answer – but why are people getting genetic tests and is it becoming more [indistinct]?
Mulino:
Yes, so as Jane indicated, the number of people getting genetic tests is on the rise. That’s a good thing. Hundreds of thousands of people are currently getting tests but what we’re also aware of is that there are situations in which some people are not getting tested where it could be to their benefit. So, we want to make sure that we boost that overall upward trend by taking away any fear that people might have that there would be an impact in their life insurance premiums.
Tiller:
Often people in the past have gotten testing because they have a family history of disease or reactively because they have had a cancer or they’ve had a heart attack and they think it might be because of something genetic. Increasingly, we are starting to test people at the population level.
We have a study at Monash University called DNA Screen where we are proactively testing people to find out people who are at high risk of genetic diseases that they can prevent. We want to scale that up at the population level. We need to get funding for that but also, we need protections because many people who sign up to our study, when they find out about insurance implications, decide they don’t want testing and they drop out altogether. And this is one of the things we need to do and we need to have the government do to make sure that people are protected before we can start to scale this up to the broader population.
Journalist:
Sorry, just while you’re at the microphone, are there any specific diseases that are particularly helpful for getting tested? I’m thinking about breast cancer, for example.
Tiller:
There are some things that are very well known to have links with genetics. There are many things we can test for, but things like the BRCA gene, which Robyn has a change in very high risk of breast cancer. Angelina Jolie had it so a lot of people know. There are very high risks of bowel cancer with the Lynch Syndrome, high risks of heart disease, heart attacks, genetic high cholesterol.
These are things that are well characterised that we could test everyone here today, In our study one in 50 people just in those 3 conditions had a very high risk. These are common in the population. Action [indistinct] prevent that people are choosing not to have testing for because of the fears that are now going to be solved.
White:
The government is also broadening the criteria for MBS items relating to different genetic tests. So, we are seeing a huge increase in the uptake of genetic testing, particularly around breast cancer and this year and last year the government broadened the criteria for genetic testing related to BRCA for breast cancer patients and the year before there was broadening of the criteria for ovarian cancer patients. It’s really important. And what happens when these cancer patients have genetic testing is they’ll find out they have a gene mutation but then that has flow‑on effects for a family as well. So, a lot more genetic testing beyond the cancer patient.
Sophie Scamps:
My former job was as a GP and so I understand intimately how this genetic testing can transform lives and save lives, and I had those really difficult conversations with patients about whether they should get their testing or not because they were really fearful about how it will impact their health insurance going forward.
So this is a great move and really good to see because when people know they’re able to prevent – so this is great work and thank you to everyone who’s worked so hard on this. It’s been an incredible, I think, cross‑party alliance to get this over the line. But thank you so much for the work you’re doing. But there is, I think, a greater understanding of the genetic basis of so many diseases now and that is only blooming, so it will continue to rise.
Journalist:
Just one more for Mr Mulino, if I may. There’s a case that’s gone into the Brisbane Supreme Court around the ATO pursuing a woman [indistinct] she had done wrong. They have found a level of misconduct by the ATO. Are you aware of that and what’s being done to address that?
Mulino:
Look, I don’t want to talk about specific cases, but what I can say is that I’ll get briefed in due course on that case, and that there are very rigorous processes inside the ATO that allow that organisation to examine the conduct of its officers. They are bound by public sector codes, as are all public servants. So, that is something that I will let play out, but I will get briefed on that.
Journalist:
Thank you. And just one more for Robyn, if I may, back on the testing. When you got your genetic testing done, were you aware of the fact that it could impact insurance?
Smith:
Yeah, look, as part of genetic counselling, those discussions do include talk about insurance. I think at the time, obviously, with someone in the family with a cancer diagnosis, we were probably more focused on her and just worrying about health. But that’s not what everyone does. I think some people are worried about the financial implications of it. So we were definitely told as part of genetic counselling that we should be sure that our insurance was in order before we undertake a genetic test.
Journalist:
What was your reaction when you heard that? Because in some ways in my mind the idea of getting genetic testing for people who think you might have a predisposition to it seems like you’re doing the best thing for your own health. What was your reaction to that? Did it seem unfair?
Smith:
You know, we can’t choose our genes and I was born with a predisposition to cancer through no fault of my own. So, yeah it does feel a little bit unfair at times and if doctors make recommendations and say, ‘Yeah, you should undertake this genetic testing’, it makes sense that we’re protected to be able to do to do it and we can’t be proactive if we’re not protected to do that.
Journalist:
And just one more, logistically, what happens to people who have already done genetic testing who have insurance right now? Is it retrospective?
Mulino:
No, this is a prospective measure and that was always the way that it was set up. But there are opportunities for insurers to engage with individual members and to look at what arrangements they can make going forward.
Now, I am getting signalled that I actually do have to go into the chamber to give this introduction and first reading. So, in order to give this press conference due heft, I probably should comply with that timeline.
Thank you all very much and thanks again to Jane, to Robyn, to Christine and to all the people who have worked so hard on all of this in a very collaborative way and, of course, to all my parliamentary colleagues right across the spectrum. It’s a wonderful example of very productive collaboration. Thank you very much.