Topics: Nation Action Plan for Endometriosis and funding to implement it; My Health Record
PROFESSOR JASON ABBOTT:
So, thanks everyone for coming today. I’m just going to explain a little bit about endometriosis. Endometriosis is a complex pelvic disease that affects the female reproductive system and can cause pain and infertility. It’s a very common disease, 10 per cent of women will have endometriosis and we know that it affects about 730,000 Australian women.
So it’s very prevalent. The pain that women experience is often said to be worse than cancer and of course, it’s a lifelong disease and it can really impact women substantially from an emotional, a physical and an economic perspective as well. We know that the disease cost the community up to $6 billion a year and of course, many people don’t know what endometriosis is. So, the fact that we’ve now got a National Action Plan and some awareness around that and thanks to everyone who’s been involved in this to progress this forward. So it’s a fantastic day for endometriosis and for everyone here. So thank you very much, Minister.
Great. Well look, thank you to everybody for hosting us here today at the extraordinary Royal Hospital for Women. This is one of the great hospitals not just in Australia, but for women around the world. It’s an important day. Endometriosis is an issue that can affect so many women and so many lives. 730,000 women and we have our amazing ambassadors here today and I want to acknowledge Emma and Ellie and so many others that are here today, that we have Mel who’s such a strong and outspoken voice on this.
Leaders such as, from the parliament, Nola Marino who because of her daughter Kylie’s agonising and indeed I think life threatening experience, has been a champion and a guide and a (inaudible) for me, as has Nicolle Flint. In December, on a bipartisan basis we set up the Parliamentary Friends of Endometriosis. We had leaders such as Syl and Donna and so many others from within the endometriosis community there, and part of it, we have our clinical leaders such as Jason.
But above all else, we’re representing all of the women in Australia who have suffered in silence and whose time has come to be able to speak with confidence. So, we know this great challenge of a condition which can be agonising. A condition which can therefore have huge impacts on physical health and mental health, it can have fertility impacts.
Jason was saying to me that of the women who are going through the IVF program for fertility problems, up to 40 per cent of them have endometriosis. So it can be a crushing condition and an enormous challenge. Today, I am delighted to announce and release the Nation Action Plan for endometriosis. This is the first Nation Action Plan for endometriosis and the reason it’s so important is it lays down for the first time a five year pathway, built on three pillars.
Firstly, education and awareness, and that education includes education of the medical community but also of the sufferers and their families. That this is a common condition, it is something which is perfectly normal and for which there is treatment available and that those women and girls who suffer from endometriosis should feel free to talk about this in the way that anybody might talk about a knee injury or a hip injury and increasingly as we’ve seen, mental health and the confidence to seek help. It’s the same path and the same task. So this is not the beginning of the end for endometriosis sufferers, it’s the end of the beginning and the pathway to a whole new world of recognition and treatment.
The second area of the support in this plan today is in relation to treatment in particular, we are working with the medical community on that front and working with the College of GPs, with the College of Obstetricians and Gynaecologists and we are working with the medical research community for the third element of the National Action Plan. And I’m delighted to announce that as part of the medical research, $2.5 million will be made available for clinical trials.
And so these clinical trials are about research, but through treatment, giving women options to have early treatment, early intervention and better outcomes, and those better outcomes will help not just the women that are involved, but all women who suffer from endometriosis. So that’s such an important part of the research. In addition to that, we have already announced a million dollars for education and we’ll be working with the GP community and the Obstetrics community on that front.
And then finally, I’m delighted to announce a further $1.2 million to take the total investment to $4.7 million. This $1.2 million will be $1 million for implementation of the National Action Plan, and $200,000 for an immediate social media campaign to be designed for by a steering group, which will focus on giving young women in particular the confidence, the knowledge that they can seek help without being dismissed.
We issued a national apology for the failures of the past in December. It was something that I personally wanted to do and chose to do. Now we move to the reconciliation and on that front I’m delighted that Kristina Keneally, Senator Keneally showing that this is something beyond all parties. But it’s an important and critical day.
Finally, I want to announce that we will have a steering group, eight members of the steering group have already agreed. It will be co-led by Janet Michelmore from the Jean Hailes Foundation, and Professor Abbott. But of course, we have Syl who’s been such an amazing leader, Donna has agreed to be part of it.
We have other medical professionals such as Professor Peter Rogers and Steven Robertson and Dr Susan Evans and Jessica Taylor. So an extraordinary group of women and men who will lead the implementation of the program. Above all else, today is about hope and treatment, ending the silence and giving our amazing patients such as Emma and Ellie and Mel the chance to have a better future and so they can be stronger advocates. But every woman who needs help can seek help.
Thank you, Minister. This is indeed a fabulous day for every young woman and every woman who is currently suffering from endometriosis, the first ever National Plan for Endometriosis in Australia. What a great day this is. How about we just have a big clap for how good this is?
And I want to thank all of those who shared their stories with us. There are several gathered around here today, who have been very much promoting the issues around endometriosis for such a long time. And I want to thank all of the woman who have suffered so much for so long, as the minister said, frequently in silence. Today the silence ends. And from here we’re going to see so many young women who hopefully won’t go through what the women who have been suffering quietly for so long have done.
I hope this is the beginning of the future for women with endometriosis from the very beginning of how the diagnosis happens, the treatment, their care. And I’m looking forward, I hope, Minister Hunt, that today, with the research that’s part of the plan, that at some point we can look back and say this was the first day that the cure for endometriosis, the beginning of the end of endometriosis. And I think if we have to start somewhere, this is a great start. But I want to also thank everyone around me who’s worked so hard for so long, acknowledge the suffering of women around Australia and around the world.
But I really want to thank the minister as well. Because from the first time Nicole and myself went to see him and discussed what impact this has on women’s lives and how the quality of their life changes forever, the minister understood it, he acted very quickly. I think the speed of this has been amazing. But it just shows how serious the condition is and how much the minister understood how serious this is for women more broadly.
So, thank you all for being here today, this is a fabulous day. And to all young women, like my own daughter, and for the mature women suffering from endometriosis, I hope this the beginning of a change in your quality of life.Thank you.
I just want to say on behalf of all women with endometriosis across Australia that this marks a monumental day. To have formal recognition and a formal apology means so much to so many women and girls who for years have been ignored, had their pain not believed, not been taken seriously, told that the pain is all in your head or to just go and have a baby to cure your pain.
The list goes on, the type of misinformation and poor treatment that women and girls, for probably centuries, have received. So this is an incredibly important day to have endometriosis recognised. And even just to have the words spoken publicly is just such a big deal for so many women and their families. So we want to thank Minister Hunt for giving us the opportunity to have a big hand in designing the plan and speaking- you know having women with endo at the forefront and their needs and their wants met. So thank you so much.
Hello, my name is Ellie Angel, an ambassador for Endometriosis Australia. And I just wanted to say a massive thank you to Minister Hunt and to everyone. I do get emotional talking about this because it is something that I’ve had to suffer from for so long. And I just want to say thank you and- for the one in 10 women that do go through this disease, this means everything in the world so thank you, thank you, thank you, thank you. And thank you as well to the families that have suffered as well. Always bring your tissues. So, thank you very much, Minister and to all of the endo sisters out there, you’re not alone. This is the end, the silence, onwards and upwards girls.
Very happy to take any questions, if we could start with anything on the National Action Plan and then other issues after that.
Minister, on the treatment, the treatment for endometriosis hasn’t changed a lot for so many years. It’s quite a difficult surgery, which many women undergo many times, other than that it’s mainly pain management. Are you hopeful that we could see some new options for treatment coming out of this, out of this research?
Yes the funding for clinical trials is all about new options for better treatment. And we start with better treatment but we aim for a cure. And so, that’s the great work that can be done. Also related to this, of course, there’s the national genomics mission. And much of this is related to inheritable conditions but certainly not all of it. That was the medical advice that we’ve been given along the way. So this program and this plan proceeds as a fundamental path forward but it’s also linked into the genomics mission. But right now the clinical trials are about giving better options for better treatment.
Can you talk a bit about what it means for women who might have employers who are not across what endometriosis is and the effect that it has?
I think part of our role is to say endometriosis is real, significant, important, it’s been buried in silence for too long. That silence has to end and this is the moment where it does end. I do draw the comparison with mental health because mental health, which is such a critical issue for Australia, was buried and hidden.
Endometriosis is on that same journey but starting later. And we are saying that endometriosis can change your lives, it can damage your lives. All we need to do is look at the way Ellie spoke. And that message, Ellie’s message, is the message we’re sending to every employer that when a woman is affected by endometriosis it can be absolutely profound.
Just on diagnosis, one of the issues with endometriosis is the fact that you can really only diagnose it through surgery. Is that going to be looked at, as well, in the national plan?
So, the National Action Plan is looking for better diagnostic tools, ways of diagnosing earlier and on some of the clinical questions – Jason, do you want to add anything?
PROFESSOR JASON ABBOTT:
Yeah, this is a really important aspect and we’ve got a collaboration here at UNSW, University of Melbourne and University of Queensland looking at exactly these issues, how we get better diagnostics, looking at the genomics of endometriosis and putting all of that together and into a better plan.
It’s absolutely imperative that we have a better way to diagnose it and not have to go to that invasive stage of endometriosis. It’s hard work, it’s absolutely hard work. And the minister’s announcement of the MRFF is a perfect starting point for us to expand that and realise our aspiration of exactly that, getting a non-invasive diagnosis.
How long will it take before the action plan is actually rolled out?
No we’re starting immediately and I think the important point is the clinical trials funding is available, the steering committee will help guide it and having the leadership of Janet and at the same time Jason. So advocacy from within the community as well as the leadership of one of Australia’s great clinicians, coupled with the support of the steering committee, means we can get on with this and do this immediately.
Is there a particular treatment that is- you’re looking at to trial first? What are the clinical trials going to look at?
So, those clinical trials will come from the medical community and so what we’re doing is we’re saying to them, here is funding, here is support, it’s not the end of it by the way, but right now this opportunity is available. So Jason will work with the medical community, Janet will work with the medical community, Syl and Donna and others will be all part of that.
And they’ll bring forward whether it is surgical, whether it is genomic, whether it is in relation to other different forms of testing for early diagnosis, and the engagement with the GP community. They will progressively make Australia, I hope and I believe the world leader in endometriosis diagnosis and treatment.
The message to employers, I wanted to just talk about that for a minute. What message do you think with this in your hands, you can send to employers and what do you want them to know and to realise?
I think even from a personal experience I felt that my employer was so understanding, that this was a really important issue, especially for women in general. And so, I was really well understood and I am in a company of a lot of males and they were very understanding, and I think it was really helpful for me. But I know a lot of women suffer because there isn’t a lot of understanding and that’s purely from an education basis. And so this idea of education right from an early stage is going to be so helpful further on.
I’ve had to call in sick before and I remember a boss actually saying to me, just take some Panadol and you’ll be okay. Like they just- he genuinely thought it was just bad period pain and endometriosis is so much more than that and that’s what people need to know and they need to be able to feel okay to pick up that phone and say, I’m having a flair up, I’m having a bad day, I can’t come in. Instead of lying and saying I’ve got gastro, I’ve got a migraine, all of which are accepted as excuses. But endometriosis is a chronic illness, we should be able to say it.
Do you think there’s a lot of that? Do you think a lot of women do lie about their endometriosis pain when they’re calling in sick to their employer?
I think a lot of women would lie about what’s going on, especially if you’ve got a male boss. No one wants to talk about a period. Just the thought of that freaks people out, but they need to understand and realise its normal. And so many women, one in 10 have this. They will know someone that has endometriosis.
On My Health, what guarantee can you give that a doctor say working for an insurer can’t misuse a patient’s My Health Records and pass them on to their insurer?
So firstly, that would be illegal. Secondly, there’s a digital footprint and thirdly, documents can’t be produced without a court order. That’s the clear practice and policy of the agency, it has been for six years. It is the case and it will continue to be the case. It’s illegal for insurers to access the My Health Record.
Why not change the legislation, Minister?
Well I’m working with the AMA and the College of GPs. I’ve spoken with the incoming President of the College of GPs today. I’ve spoken with the President of the AMA yesterday, and we’ll be catching up next week and I’ll work through any of their concerns. The great news is the Labor 2012 legislation sets out a base, the policy and practice is even stronger.
So after six years with six million people on the record, the critical thing is, not only are they having access to their records for the first time, they can access their own material, they can completely control their own material. But also, there hasn’t been a- the advice that I have, no data breaches and no releases to any law enforcement agencies after six years. But none will ever occur without a court order and that will always be the place under this government.
But if you re-wrote the legislation, wouldn’t that put those concerns to bed? I mean, its sound like if Labor passed it, wouldn’t you have bipartisan support to change it?
I’m very happy and I’ve spoken to both the President of the AMA and the incoming President of the College of GPs today, and I’ll be meeting with each of them next week to talk about their concerns and any suggestions they have for strengthening the current situation.
But that suggestion is being made today, so are you open to that? Are you open to changing the legislation?
I won’t pre-empt the conversations but I think the important thing is, everybody now knows the standard in Australia is that there cannot be a release without a court order. That’s the formal practice and position of the agency and department.
But it’s not law though.
Well I can’t speak for the Labor Party, I can speak for what we have put in place, and that is the case and that will continue to be the case. But I’m always open to strengthening those protections to ensure that people have complete confidence that nothing can ever be released without a court order. That is the existing situation, but I’m always open to the public interest and to ensuring that the public has complete confidence.
So, to clarify, you are open to amending the legislation?
I won’t pre-empt the discussions but I will say…
Well, I’m not talking about your discussions with the AMA and the Royal College of GPs, I’m just talking about your position, are you open to amending the legislation?
I won’t speculate on that. I will say this – six years, six-million people, no disclosures and an absolute iron clad policy which will never change under this government and is the formal position on the agency’s website and through its policy and practice of no disclosure without a court order.
So it’s become, in many ways, a comparison between the reality and the position put forward by some of a hypothetical which doesn’t exist. But in order to deal with that, I think the right way to go is for me to work constructively first with the presidents of the AMA and the College of General Practitioners. And I’ve had very, very, very constructive discussions with each of them within the last 24 hours.
What did you talk about?
We talked about making sure that there’s complete confidence for the medical profession, which, by the way, has been a tremendous supporter and they fully support the My Health Record because as Dr Bartone wrote in an article in The Sydney Morning Herald two days ago, it’s about saving lives. And they also want to make sure that patients get the best access.
And what they’re going to do, and I’ll wait until they come to me, is with any proposals, so as to strengthen the perceptions around the existing practice. So, the existing practice is- under no circumstances would an element of the record, all the record, be in any way, shape or form released without a court order. That’s the important thing, none ever. Not one, not ever released. Not one, not ever will be released without a court order. And we’re very happy to work constructively with them on any proposals that they bring to me.
Why not put it in law?
Well, I think I’ve dealt with that. I’ll work constructively with them, I won’t pre-empt what they bring to me. Okay thank you very much.