Topics: $36.8 million for Parkinson’s disease; My Health Record; Electorate of Flinders and Kooyong
Look, I’m delighted to be here today joined by obviously Member for North Sydney Trent Zimmerman, Senator for New South Wales John Wacka Williams, Professor Antony Cooper, who is the lead of the Australian Parkinson’s Mission, and in particular, our patients in terms of Nikki and Marian, and all the others who are here today.
Today is about hope. Today is about saying to the 100,000 Australian Parkinson’s patients: your lives can be better; that we can make a difference; that we can search for better diagnosis, for treatment and for a cure.
And in addition to that, we can support the patients that need that help with nurses in rural and regional Australia, focused and dedicated on the needs of Parkinson’s patients. So it’s a $36.8 million announcement – $30 million for the Australian Parkinson’s Mission and $6.8 million for Parkinson’s nurses.
But above all else, the Australia Parkinson’s Mission is a world-leading mission bringing together some of the world’s best medical researchers to work with patients such as Nikki and Marian to help deliver better treatment, better diagnosis, and the potential for a cure.
I might ask Antony, if you want to say something, and then Nikki.
Look, it’s just a real honour and privilege that we’re here at the start line of what we think will be something really transformative for Parkinson’s patients in Australia and globally.
I just want to really thank the minister and the federal government for their support to allow us to really get into it and start helping patients.
And Nikki, would you like to say something?
Yeah. Just a massive thank you, and I guess this announcement gives people like myself hope that we’ll able to live the life that we thought we would lead until we were given the Parkinson’s diagnosis.
It has a massive impact on life, and yeah, it just gives us hope.
Happy to take any questions on the mission and I’ll deal with other questions along with Trent and Senator Williams after that.
Minister, can you tell us how it all works? So, the funding goes to the Garvan Institute for the genomic sequencing. Then how does the process work through to the patient?
So ultimately, there are two halves to the mission and it’s not just, of course, Australian funding.
There is funding which is coming from Shake It Up Australia; Parkinson’s Australia is working on fundraising; it’s part of the UK trust for Parkinson’s; and I’m advised that The Michael J. Fox Foundation will also be contributing.
If you think of the two halves, there’s the genomic diagnosis and then there is the targeted treatment of the patients, and there’s a basket of different drugs, and so one of the things we were discussing is that in classical clinical trials, you will have two patients – one who gets the medicine, one who doesn’t.
A basket trial means that a vastly higher proportion of patients get different medicines and they can trial them and test them. I might ask Anthony to add anything on the actual trial method.
Yeah. So instead of half of the patients getting a placebo and the drug, this is testing – our first multiple clinical trial is testing four different drugs; and so they’ll be – 80 per cent of the patients enrolled in the trial will be trialled on one of those four drugs and the placebo makes up there.
So there’s a much higher proportion of patients in the trial who will be- have the opportunity of a positive effect and it makes the trial much more efficient, more cost effective. We’ll be testing four drugs at once rather than one at a time.
Have we had a trial of this scale in Australia before for Parkinson’s?
No. This is the largest investment in Parkinson’s research. Previously, through the National Health and Medical Research Council over a period of many years, there’s has been an investment of- a cumulative investment of about $83 million but no single trial, no single project, has been remotely close to this in terms of its size or scale or scope.
And Minister, you mentioned before that you actually have a sort of a family connection with the disease, so I guess you yourself know what this could mean to families and those affected.
Yeah. My father’s partner, Leila, for her last decade, had a progressive and degenerative Parkinson’s – so obviously very, very severe – and she went into care for the last year of her life; and we were very, very close and I saw and I felt the impact of Parkinson’s on her, on my father, on all of the family members around.
And so as somebody who has witnessed this and seen the impact, I know that this matters. It matters deeply and it’s personal and it’s important, but it’s profoundly significant for 100,000 Australians and potentially more than a million who surround and support them.
Alright, thank you very much.
We would like to ask you about a couple of issues, Minister, is that okay?
I just want to ask you: tomorrow is the deadline for the My Health Record. What would you say to Australians about whether they should opt out, or whether they should just let things slide and have a record created for them?
Well this is a project which has been under development for over 15 years. It’s been in operation for six years. The great thing is any Australian can opt in or opt out at any time in their life.
It’s completely their choice and we’ve strengthened those privacy provisions. We’ve worked with and listened to the community.
We’ve made changes and above all else, it’s about saving lives and protecting lives. I have Dr Meredith Makeham here, who is the chief medical adviser, and her work has, along with the Digital Health Agency, been about strengthening those provisions, but it’s been operating for six years, but every Australian has the choice at any time in their lives, they can opt in or opt out.
The figures on how many people have opted out, is that what you wouldn’t expected, or what’s your reaction to the fact that there’s been more than a million people opting out?
No, we at the outset set guidance – there’s never been a target – but we set guidance that we expected that about 90 per cent of Australians would be participating, which we’re still on track for.
I think that would be an extraordinary result. It’s far higher than I had ever really hoped, but that was our expectation and we’re on track to meet our expectations.
And if 90 per cent of Australians are part of this, it’s about bringing health and medical records into the future and it’s about saving lives. So I think I might just ask Meredith to mention …
Could I answer too, Minister, if I could please?
Yeah, very briefly some of the benefits. So, John first and then.
Take for example: if I’m in an accident in Sydney today and I’m taken off to hospital in a pretty bad state, they need to know I’ve got Parkinson’s disease, the medication I’m on, glaucoma for my eye drops, but also that I’m allergic to Penicillin.
So it’s important that if I’m not at home at (inaudible) where my local doctor knows all about me, but if I’m in an accident somewhere, the people that are treating me know how to treat me, what I’m, you know, allergic to, what medication I’m on because they may have to change medications in my recovery.
So I think that’s the really important thing for the health of people. Thanks Minister for your great work today.
Thank you. Meredith?
Thank you. I mean I could add to that as well. I’m actually a GP and from my point of view, if I’ve got access to accurate information that I can see in a patient’s My Health Record, it means I’m less likely to make mistakes and they’re likely to get safer care.
It’s really empowering for people as well to have access to their own health information.
People with chronic and complex conditions like Parkinson’s disease would be able to see all of their own medications and other information about their treatments.
And so Dr Makeham, what have you been advising your patients about whether there should sign up or not?
Well look, it’s everyone’s individual decision whether they’d like a My Health Record, but I strongly support the My Health Record system for my patients, because it brings so many benefits to them.
As we’ve heard from people with complex and chronic disease, other people, just every day convenience as well.
It’s so easy for us to forget all of the stuff that happens in our lives over the course of our medical history and to have that at your fingertips and to have your children’s information at your fingertips, it’s a really great benefit for people.
And what do you say to your patients who might be concerned about the safety or security of information that’s on the record?
The My Health Record system is a highly secure system and there are also a lot of very sophisticated privacy controls if people choose to exercise those.
We do talk about all of those and I recommend My Health Record and I tell my patients that if they choose to they can put a record access control over their My Health Record – that’s effectively a PIN.
So unless you share that PIN with someone, nobody will be able to see it.
Can you also just explain the fact that it won’t collect old data and things that have happened to the past so that’s previous (inaudible) visits?
Yes. That’s absolutely correct as well. So it’s a common myth that people think that the My Health Record system will reach into the past and show all of their past medical history and information from previous hospital visits or general practice visits.
It’s simply a shell when it’s first opened and as you go forward and encounter the health care system, it will collect information, key summary information if you would like to go in there.
So it’s up to a patient what information gets stored in their My Health Record, and it’s up to you who you want to share your My Health Record with.
Minister, on another topic, what do you think of Oliver Yates taking on Josh Frydenberg for the seat of Kooyong?
Look, that’s a matter for the individual concerned. I understand he had very extensive involvement in the fossil fuel sector, so it’s a fascinating circumstance.
So I’ll let him explain his history in the fossil fuel sector. Somebody, you know, has already referred to him as Mr Adani, and so it’s one of these conversions that people have, but that’s a matter for him.
But I’ll tell you what, knowing Josh, he’s not just determined but he’s an absolute passionate advocate for his own local community.
He lives there, he’s raising his family there and he and his wife have made their home there. He’s engaged in all of the different community events, whether it’s preserving and protecting the health of the Yarra or whether it’s working with Rotary or Lions or sports clubs.
I’ve seen him work in his area and he’s just a tireless advocate as a local member as well as an outstanding Treasurer of Australia.
Kerryn Phelps had success as an independent in what was a safe Liberal seat. Do you think that Kooyong could also be in danger then?
Oh look, I know Josh and I know myself. We treat our seats as marginal every single day. I’ve just walked 500 kilometres around my electorate.
He works immensely and tirelessly hard within his own patch, and so we always treat our seats as if they are absolutely marginal because under the Constitution, our first duty is to be a representative for your own constituency and local electorate.
Minister, can I just take you back to the My Health Record for a moment. The fact that there’s been so many changes made to it, does that mean, initially, it wasn’t up to scratch?
Well the initial legislation was Labor legislation and there haven’t been any significant incidents over the course of, now, I think 6.4 million participants and six years of operation.
But we listen to the community and we worked on adding additional safeguards and protections. Although there hadn’t been any significant issues, we wanted to provide that extra security and extra support.
So we did what Labor never did with their legislation – we added those supports and extra points of security. But above all else, the great thing is it’s every Australian’s choice: they can opt in or opt out at any time in their life.
But doctors such as Meredith Makeham, and so many others, make the point: it can save your life. As John Williams said, as Wacka Williams said: if he’s in an accident and he’s allergic to penicillin and they don’t know it, it could be catastrophic.
But because of My Health Record, he knows he’s got the security that wherever he is, whatever his circumstances are, he’ll be protected against that allergic reaction.
I’d like to ask you one more question from my Canberra colleagues. Do you expect Julia Banks to run against you as an independent?
I’ll let the individual in question determine their own future. For me, I grew up on the peninsula. I’m passionate about it.
Whether it’s been working on the clean-up of Gunnamatta Beach, preserving Point Nepean, working on creating Somerville Secondary College, working on helping to establish the Balcombe Grammar School, working on cleaning up intersections such as Forest Drive in Mount Martha or new sports facilities in Mornington.
I was- I went to school at Mornington Primary, my wife worked at the Mornington not-for-profit hospital, our children were born at that hospital.
So this has been our community throughout our lives and it’s something I’m passionate about. And so for me to have the opportunity to continue to represent that area is something that would be a privilege.
But next, now, we’re fighting for better cancer services for the Mornington Peninsula, for an upgrade to Rosebud Hospital, to actually deliver the electrification of the Baxter railway, which Labor is opposing. Labor is opposing the electrification at state level of the railway to Baxter, which is short changing Peninsula residence. So there are the things we’re fighting for.
And how vulnerable do you think that the electoral is given some of the swings we’ve already seen in Victoria against the Liberals?
I’ll always treat it as completely marginal from the very first day that I put myself forward for preselection to this day; that has never changed.
And as I say, I’ve just walk 500 kilometres around the electorate and that’s part of the passion of visiting 50 schools and 50 towns over a three-week period and working for autism, working and meeting with families.
I got an e-mail yesterday from a dad whose daughter had- they live on the Peninsula, who had just started the treatment for cystic fibrosis with ORKAMBI, and that’s what makes you do the job.
Those outcomes for your community and for your people and that idea of never walking away from your community. That is what really matters.
Sorry. One more from Canberra. Can you guarantee that people won’t have their My Health Records wrongfully exposed?
Thank you very much.