Date published: 
18 July 2018
Media type: 
Transcript
Audience: 
General public

GREG HUNT:

Today is about saving lives and protecting lives. It’s about hope for patients and for families who are dealing with the great challenge of rare cancers. Rare cancers affect 52,000 Australian people a year. Individually they may be rare but collectively they add up to over 50,000 Australians who face that challenge.

This is giving them the opportunity and the capacity to understand the source of their cancer and to potentially have treatment. Five thousand Australians will benefit from the Australian Cancer Genomics Medicine Program. The Australian Government will contribute $50 million towards sequencing and treatment for those Australians with rare cancers.

This is on top of the $250 million which we've already contributed. And many thanks to Richard and Kate through the Rare Cancers, Rare Diseases clinical trials program and the $500 million for the Genomics Mission. In short, what we see today is the future of medicine and that future is here in magnificent patients such as Sarah and Matt, Brett and Darren, whose lives have been transformed. It’s, in the end, giving families a hope and an opportunity to live longer, better lives and to beat cancer. I might ask Professor David Thomas and then Kate if they might wish to speak.

PROFFESSOR DAVID THOMAS:

Well, as the minister said, one-third of all cancer patients face these rare and uncommon cancers and it kills more of them than in any other sector of the cancer community. Genomics has the potential to completely transform opportunities for those patients through introducing those people for the first time into the research enterprise. It’s through research that we invent the medicines of the future. This is a major step in that direction. Thank you.

KATE VINES:

Just want to thank the minister today. What this announcement means is hope for rare cancer patients. Those patients who have felt neglected and alone and that no one cares about them. This will offer treatment and brings such an amazing deal of - can only be hope is the best word to describe it, so we thank you so much.

GREG HUNT:

It’s a pleasure. Happy to take any questions, firstly on the Genomics Mission and then any other topics after that.

JOURNALIST:

Roughly 52,000 people with a rare cancer at the moment, 5000 take part in the trial. What’s that clinical selection like? That’s such a big discrepancy.

GREG HUNT:

I’ll let David talk about that.

PROFESSOR DAVID THOMAS:

So patients will be offered access to the program if they have an incurable cancer, who have run out of treatment options and provided that it is appropriate in the view of their oncologist that they receive experimental therapies.

JOURNALIST:

Minister Hunt, it's exciting. In your press release you say quite confidently this will save lives. That’s a bold statement. How does this work and how will it save a life?

GREG HUNT:

Well, I think we've met four lives already today that have been saved and I'm looking actually up at Sarah and to meet George who’s become quite a focus of today because in a way Sarah's life is incalculable but him having his mother is the most extraordinary of all benefits.

And the way it saves lives this is very simple: it allows us to see the cause of specific tumours which were otherwise unable to be diagnosed and from there to find treatments. It won't happen in every case. That's the honest truth. But it will happen in far more cases than would otherwise have been the situation.

And what we're seeing and David has lived this journey, is that more and more patients are having new immunotherapies, new targeted treatments made available to them and this is part of the process, along with the Rare Cancers, Rare Diseases clinical trials, along with the new PBS medicines that we're listing only this week such as Opdivo and Imbruvica and along with the National Genomics Mission. All of these things are coming together to treat more and more patients. David, I don't know if you want to add anything?

PROFESSOR DAVID THOMAS:

No, I think that's exactly it. We've never been at a more important time in medicine. The treatments that are coming along are quite extraordinary. I've seen people's whose lives have literally been saved. That is, they would have been dead within a matter of weeks, who are now walking around and contributing members of society, holding down jobs because of science. So it's not theory.

GREG HUNT:

Any more questions on this? We’ll let you guys go.

JOURNALIST:

Minister, on My Health Record, with so many people opting out, is it a case of people not having faith in the government to get it right?

GREG HUNT:

No, we have created a system which was foreshadowed in 2005 and announced in 2010, commenced in 2012 and now we have six million people - six million people, six years. We were always designing a system which included opt out.

Where it's been held in the trials, the participation rate has been well over 90 per cent and indeed has been up to 98 per cent. So as a percentage of Australians, it's likely to be, again, well over 90 per cent that participate. But the beauty of this is every Australian gets the choice.

The benefit of it is of course that this is about ensuring that we know our history. Any of us anywhere, anytime, can call our medical history up for the first time. This is our information that any Australian should have a right to access and which hasn't previously been available. So it's an important right and it's an important medical breakthrough and step forward.

It’s the medical authorities that have recommended it, the medical authorities that have advised on it, the medical authorities that have helped contribute to the design and the consumer bodies that are fully supportive. And so everybody has a choice, that's one of the wonderful elements about it. But what we've seen is six million Australians say yes already. But any Australian can choose to defer, any Australian can make a decision and I think that's the important part of the operation.

JOURNALIST:

Exercising that right though, involves being on the phone for hours potentially to ...

GREG HUNT:

No, with respect, I checked yesterday and as of yesterday afternoon, the average waiting time was about 10 minutes.

JOURNALIST:

Did the government fail to communicate the benefits of the database and ease community concerns?

GREG HUNT:

All I can say is that where we've held the opt out trials, there's been a well over 90 per cent, I think close to 98 per cent rate of people participating, and as a country we would expect well into the 90 per cent of people to participate. And so the vast majority, the overwhelming majority of Australians are likely to participate.

But any individual Australian, precisely as the system was designed, precisely as it was intended, has that choice. But it’s their data, they own it. And for the first time, they have access to it with total control as to whether or not they even want a record, or if so, where only they can access the record, or if they want their doctors and their specialists to be able to access it.

JOURNALIST:

Do you believe that the Government did enough to educate people about this system before this three-month opt out period began?

GREG HUNT:

Well, this is only the commencement. People can opt out at any time. The three months simply says, I don't even want a record to be created. At any time within the future anybody can choose to say, I no longer want to have it. So I think what we're seeing is- I had not expected us to be at 6 million people by now. We're far ahead of our expectations as to how many Australians would have signed up by now.

So we're actually dramatically ahead of where we'd anticipated by this stage. We're well ahead of what we'd expected in terms of the general practitioners participating, over 600 million items have been uploaded. We have 75 per cent of general practitioners and 75 per cent of hospitals and over three-quarters of pharmacists, all of whom are either on the scheme or will be on the scheme and participating by the end of the year. So we're actually well ahead of schedule and the nature of an opt out system is that people actually get the right to opt out. And I think that that's an incredibly important thing.

JOURNALIST:

Minister, the former head of the DTO, Paul Shetler, had some comments about this this morning. I’m sure you’ve heard them. He said the rollout is flawed and systematic of how the Government handles IT and these big programs. What do you say to that?

GREG HUNT:

I think it's very important that this program has been operating for six years. One of the reasons that there hasn't necessarily been a lot of discussion is - even though we've put out- we've done press conferences, the head of the Digital Health Agency actually attended the National Press Club only recently and there's been lots and lots of communication.

One of the reasons it hasn't necessarily been talked about enormously through the public is because with six years of operation, six million Australians and no breaches and people finding that the system is working for them, it hasn't been an area where there have been breakdowns or problems.

The point is it gives each and every Australian the choice as to whether or not to participate but total control for the first time over their health data. So personal control, but above all else, what this is about is it means that if you have incompatibilities with medicines, your doctors will for the first time be able to see that history if you're coming from another area or jurisdiction.

If somebody is bringing in an elderly mother or father who may not remember all of their history or one parent is bringing in a child who had been generally taken to the doctor by the other parent and doesn't know all of the details. It allows parents, it allows children, it allows family members, it allows individuals to have their history. And as they say, it’s been 15 years in the making, almost. Announced or foreshadows in 2005, announced in 2010, it commenced six years ago and it's been operating for six years highly effectively. And the result is lives will be saved, and that's the advice of the medical authorities.

JOURNALIST:

Minister, looking at the Government’s plans to toughen the terror laws through the extended supervision order. What is it and what is the purpose of it, and why’s it being introduced now?

GREG HUNT:

So we're following the advice of the Parliamentary Committee on Intelligence and Security. The Attorney-General is in the process of preparing a response and implementing that, and the extended security orders are about protecting Australians.

It's about making sure that there are protections against those who have been convicted of crimes. I will leave it for the Attorney-General to focus on the specifics, but he will be coming forward in response to the advice of the Parliamentary Committee on Intelligence and Security with further tougher laws to protect Australians against those convicted of terror offences.

JOURNALIST:

Who are these high-risk terrorists, what are their names?

GREG HUNT:

It wouldn’t be appropriate for me to talk about individuals. But let me be absolutely clear, further tougher laws to protect Australians against individuals who have been associated with terrorists.

JOURNALIST:

And what’s your response to those who say they've done their time, they don't need to be tracked further.

GREG HUNT:

Our job is to protect Australians, we make no apology for that. We do this without fear or favour. Where there are threats to our national security and threats to the safety of individuals, we will be absolutely rigorous in prosecuting the protection and the interests of the broad Australian population.

JOURNALIST:

Minister, Paul Shetler said if he was Australian, he wouldn’t sign up to My Health. What’s your response to his security concerns?

GREG HUNT:

This is a matter for every individual Australian, and that's the great thing, we expect well into the 90 per cent bracket of Australians to adopt it. It's been 98 per cent in the trials but it's designed as a system where people can choose to be in or not in. And the beauty of it is they can choose to be in at any time, they can choose to be out at any time. And in the end, it's the medical authorities who for many, many years have advocated this, for many, many years have helped design and it's been operating for many years.

I think that's one of the important things. This system has actually been operating for over half a decade, and it's been operating well and the patient stories about the ability to access their own information, their own data, to understand their allergies, for clinicians to see where there are allergies, to ensure compliance with medication is about saving lives and protecting lives and it will make a big difference.

JOURNALIST:

Minister, with respect, what about people who are HIV positive who don’t want their personal details being exposed if there were some kind of breach? Could you address the security concerns of people like that?

GREG HUNT:

Well they don't have to be part of the system. Nobody has to be part of it, and that’s the beauty of it. But everybody should have the right to their own records and that's what's been missing. Our records are currently in doctor’s surgeries, they're currently in hospitals, they might be within pharmacies and people haven't had access to that. Others have.

All this does is it brings that together, so as an individual not only has access to their own material, they have complete control. Only they can see it, if that's what they want or they can allow a doctor to see it or they can ensure that there is no record whatsoever. And that's the beauty. Last question.

JOURNALIST:

Minister, the extended supervision order, what kind of sanctions are going to be imposed? Are there like curfews?

GREG HUNT:

I’ll leave that to the Attorney-General, but he will take every single step that is necessary for the toughest possible protections for Australians. Thanks very much.

Ministers: