Topics: Clinical trials funding for young Australians with rare and aggressive forms of cancer; My Health Record.
Well welcome everybody to the extraordinary Peter MacCallum Centre. We’re in the youth cancer services centre and I’m with Peter Orchard from CanTeen, Joey, who’s not just a board member but one of our magnificent young ambassadors and thriving survivors of cancer. We’ve met some of our extraordinary patients and ambassadors, such as Jess, who’s doing so well and we’re immensely honoured and proud to meet you and to see the work that you’re doing.
And then of course to have the amazing staff and clinicians who are here for today’s announcement, representatives from Peter MacCallum, led by Dale Fisher the CEO. We have representatives from Royal North Shore Hospital, from the Sydney Children’s Hospital and the Garvan Institute.
In the last week we’ve been in a fortunate position to provide support for new cancer drugs on the PBS, whether it’s in relation to lymphoma or head or neck cancer or other challenges. We’ve also been able to support new diagnoses and treatments and clinical trials for beautiful young children with brain cancer through the Zero Childhood Brain Cancer Program. In Sydney, we were able to support a national clinical trial program for DNA sequencing for 5,000 adult cancer patients, covering all of the great Australian hospitals across each state and territory in relation to rare cancers.
And today I am delighted to announce that we will be supporting our youth, our young people, between the ages of 15 and 25, with greater access to treatment for rare cancers. We know the equation, and it’s a big powerful human story, that between 15 and 25 there are between 900 and 1100 young Australians every year who are diagnosed with cancer.
We also know that the general prospects of survival are strong, 88 per cent, which is a tremendous tribute to the individual fighting spirit of people such as Joey and Jess and so many others, but also, Peter, to the incredible work of CanTeen and our medical researchers and our world leading clinicians.
The gap however has been for those with rare cancers in that age group. The survival rate is less and in particular we know that the participation in clinical trials is less. Between four and seven per cent, as opposed to younger Australians with cancer where it’s up to 45 per cent. So our goal is to increase the opportunities with participation in clinical trial, for treatment for improved quality of life and the prospect of cure for young Australians between 15 and 25.
As part of that, I am delighted to make two announcements. First, we will be contributing $3.6 million towards a National Clinical Trials Network across four cancer areas for young Australians. This will help approximately 260 Australians have a better chance at life, a better chance at hope, a better chance at living longer and better and ultimately receiving the outcomes that Joey and Jess and others have been fortunate to receive.
These four trials will cover Royal North Shore in Sydney, Peter McCallum here, the Sydney Children’s Hospital and the Garvan Institute. They will address different types of blood, brain and bone cancers, as well as DNA sequencing and molecular sequencing for those who might otherwise not have access to a treatment.
In particular, in relation to the blood of cancer we’ll be looking at ALL and the treatment there for young Australians with that particular class of leukaemia. Medulloblastoma, for the brain cancer, and Ewing sarcoma, which is a particular form of bone cancer. For those not in those particular trials, where in many cases all other treatments have failed, this is such an important thing. The Garvan Institute will be doing work in relation to molecular and DNA sequencing to try to find the root cause and therefore the best possible treatment.
So for our children, for our youth and for our adults, we’ve been building a comprehensive picture. And this is the great moment in Australian cancer treatment. Part of a global movement that Australia is at front and for us to be able to support this is a privilege and in many ways one of the most important things that any government can ever have the opportunity to do. Peter, over to you.
Thank you. CanTeen thanks you and clinicians across Australia we thank you. This has been an extraordinary moment in coming. We have dreamt really for years now about the possibility of clinical trials targeting adolescents and young adults. We know that around 150 adolescents and young adults will die from their cancer each year.
So to then be able to directly tackle the cancers that most affect them and affect their survival rates is truly exciting. We have sarcoma, brain tumour and leukaemia are the three cancer groups we’re targeting. And the reason behind that is combined, they make up over half the deaths of young patients each year. So, extraordinary to finally be able to bring to bear some of the newest developments and treatment for this really important population group.
What we also know is that if we look to 2016, for example, just that cohort of young people diagnosed in that year, the cost to the Australian economy of that group alone is $1.4 billion. So these trials will not only help us save more lives, not only help us improve our treatment responses, we will ultimately reduce the burden on the Australian economy. It’s a truly great outcome.
We have a great consortium of partners working with us right across the country. So, CanTeen is thrilled to work with the four lead hospitals that the Minister mentioned. They, in turn, have partnerships with hospitals in every major treatment centre across the country. This will be a truly national approach to target a group that, to date, has been missing out. Such an important step forward.
You might also mention the online support.
The other piece of funding that the minister referred to, which is really extraordinary, we have been working with the Government on the online platform now since 2014, we have delivered 7000 counselling services online. We have a community of 3000 young people connecting with each other through that online service. And now, we can continue to do that for a further three years, which is fabulous, Minister.
And we will continue to grow that community across Australia. Around about the third of users are young people from rural and regional areas, three or four per cent of the young people are from Aboriginal and Torres Strait Islander backgrounds. So we are reaching those people that we most need to reach and connecting with each other and with professional support.
Now, it’s my real pleasure to introduce Joey Lynch, the next speaker. Joey’s the deputy chair of the CanTeen board. An extraordinary young man, I have to say. He has been dealing with cancer for a huge part of his life. And three years ago, Joey was a very different looking young man to today.
And the scenario that Joey faced then is the one that no young person wants to face, which is that we have exhausted all treatment options. Sorry, Joey, there’s nothing left in the locker. We have Joey now standing here today as a result of some extraordinary clinical trials he will tell you more about. Joey also was on our clinical trials expert advisory group and is a great contributor to that group, who helped shape the selection of these four trials (inaudible). Please welcome Joey.
Hello, everyone. I guess, I would also just like to extend my thanks to the Minister and the Australian Government just to thank them for this funding which is really going to make such a massive difference. I can’t come up here and talk to you about numbers or facts and figures. There are a lot more better and smarter people to talk about that. But what I can just talk about is just how much this is going to mean for young Australians living with cancer.
Like, as Peter said, a number of years ago I had run out of options here in Australia. And for a number of months, I was just kind of spinning my wheels, trying to- well, trying and failing to come to terms with impending death. And not willing to accept that, I, well, quite frankly annoyed the heck out of my haematologist and instructed him to scour the world for a clinical trial or something that could save my life.
And he found something. It was in America, it was a joint project by the University of Philadelphia, UPenn – no, University of Pennsylvania, UPenn – and the Children’s Hospital of Philadelphia. Unfortunately for me, it came with a price tag. That price tag was US$600,000 which worked out to at the time about AU$840,000 which I was faced with the prospect of pay that or die.
So it unfortunately resulted in a situation where my family was forced to re-mortgage their house and I was crowdfunded through some absolutely amazing people in the community that donated their hard-earned money just to see me continue to live. And I was very fortunate enough to head over to the United States and receive that trial.
And ever since, that’s what really brought me into CanTeen’s push towards these clinical trials, sitting on, I’m not sure I’m an expert, but sitting on that expert advisory group to allocate the funding, being part of the group that lobbied for the funding.
And it’s been really my privilege to be a part of that because, as the Minister touched on earlier, there is one thing which I have particularly, if not to toot my own horn, but experienced with myself and experienced with other young people who I’ve observed that there is a fighting spirit in young people that, it never falters, it never wavers.
There’s a fighting spirit, a desire to keep going, not only for themselves but for their friends and for their family, to keep fighting and to beat this awful disease. And with this funding and with these trials, we’ll be enabling these young people to keep fighting.
They’ll be able to keep going. We’re going to give them the weapons, the tools they need, to keep up the fight and beat cancer, which is why I’m so pleased to be standing here and seeing this all come to fruition because it’s going to save the lives of people I know, which is a truly amazing thing. And I’m incredibly thankful to have it come to fruition. So, once again, thank you.
You know, I think Joey, yours is the most powerful testament of all, so you have nothing to write down in terms of your own experience. You’re the person who has lived this and now you’re in a position to be able to help all of the other young Australians. So happy to take any questions. Firstly, on the CanTeen trials and then anything else.
I’ve got some on some other issues.
The Parliamentary Library is reporting that police have the power to access My Health Records, online records, without a court order. The other day you were saying that that’s not the advice that you have. Is that still your advice?
No. There can’t be access without a court order. That is the official position of the Australian Digital Health Agency. I think there are two different issues here. There’s the legislation, which was passed in 2012 and then there’s the application of that legislation, which I addressed on ABC radio this morning.
And that standard, to which the ADHA has held itself and adopted and issued as formal policy in their formal fact statements, is that they cannot and will not issue any records without a court order and I think it’s a very simple way to look at it. They’ve been operating for six years, not one record has been released to the police in that time and they cannot and will not release without a court order.
That’s clear, categorical and unequivocal. There’s a difference here between the legislation set out in 2012 and the formal policy interpretation, and that is clear and categorical. It’s established as policy. There is bipartisan support for that. It will not be changing under us. It will not be changing under the ADHA and a six-year trial with now six million Australians is the strongest possible evidence. But clear, absolute, unequivocal and unbreakable.
Ed Husic says he’ll likely be opting out. Are you surprised by that?
It’s a matter for each individual. That’s the great thing and I think it’s very important for chronic patients and for so many others this can save lives. We saw those exact words from the president of the AMA yesterday, citing an individual patient case involving anaphylaxis, where the record was fundamental. And this has been something that’s been operating for six years, but the beauty of it is not only can any Australian choose whether they are in or out, they can control completely what records are on or not on.
What goes up, what comes down, and who has access and I think those things make it the world’s leading system. The strongest system in terms of security, but also in terms of patient choice and Peter and I were just discussing it before. I don’t know, Peter, if you wanted to add something.
The portability of health records is really critical. I think when people are going through something as complex as a cancer diagnosis and treatment, they may receive their treatment in multiple centres. So to have their record holding all that information in one place then makes their treatment management much more- can be much better coordinated.
Do you have figures on how many people have opted out so far?
We’ll have those final figures at the reconciliation at the end of the process. As I said yesterday, the estimates beforehand were that we thought we might achieve a 90 per cent participation rate. The latest advice is that we are likely to exceed our expectations, which would see well over- well in the vicinity of 23 million Australians participating, which was more than we were expecting.
Why hasn’t it been put into legislation that health data can’t be unsold or handed over to the tax office?
Well, there is actually very clear legislation in this space, it was laid down by the ALP in 2012. So, you’d need to ask them about their original legislation. But it’s very clear. Same thing. Firstly, there is absolute clarity around the position of legal authorities, around insurance, which doesn’t have access. That’s been raised.
And it’s important to understand that there’s no commercial arrangement around it either, that people own their data. So it’s a system that’s been operating for six years. Some have perhaps, for whatever reason, not explained that when they’ve been giving their commentary. Six years, no hiccups, no data breaches, no outages, no allocations under the law. That’s probably one of the largest trials, not just in Australia, but anywhere in the world and it’s not just working, but it’s arguably the world’s leading system that we have, which will save lives and protect lives.
Your thoughts on Emma Husar, should she quit Parliament?
Look I don’t have the detail. So I don’t think it would be responsible of me to try to deal with those details. So I’ll leave that to the ALP, which seems to be playing out some internal battle. But I don’t have those details so I think out of fairness and respect it’s probably not appropriate for me to comment. Thank you very much.