MINISTER FOR HEALTH AND AGED CARE, MARK BUTLER: Thanks so much for coming to St Andrews this morning, and thank you to St Andrews for hosting us here. I'm joined by Dr Neisha Wratten, who is a very long time expert gynaecologist in the area of endometriosis, Lauren Jeffries, who is a patient and who is going to talk about her experience, and Syl, who is responsible for EndoActive, which is advertised behind us, which is just a terrific advocacy organisation lifting awareness and pushing for better care and support and treatment for the many hundreds of thousands of Australian women who suffer endometriosis.
This is a condition that impacts more than a million women, maybe one in seven women and teenage girls. And for too long, too many women have been made to suffer in silence. They've been told, by many healthcare professionals, it has to be said, that this is normal: it's a normal part of period pain, or many other explanations for debilitating, crippling pain. It's responsible for as many as 40,000 hospitalisations every year, and that number has increased by about 40 per cent just in the last decade. It is a condition becoming more widespread and more debilitating. I have to say, the work of EndoActive and a range of other organisations striving to lift the lid on this condition has been just extraordinary. And I think you have seen a sea change in the community conversation and awareness about this condition in the last few years, which must be enormously rewarding for those who work so hard to achieve that. But we do have a really long way to go still.
We've been working hard to try and provide better care and support to women with endometriosis. We've opened 22 specialist endometriosis and pelvic pain clinics. Obviously, they can't deal with a million women or more who experience this condition, but they are able to provide specialist care for women with particularly severe forms of the condition. But they also are proving to be exemplars of care and support in their regions, more broadly. They're providing training for GPs and other clinicians in the area as well. So, they've only been open a couple of years, but they're providing really terrific support. We've also funded updates to the endometriosis management guidelines so that there's better awareness in the community, and importantly, better awareness about best practice among health professionals, including GPs. We’re reviewing MBS and PBS items and doing a range of other things as well, to chart a path for much better care and support for women with endometriosis. News.com.au ran a terrific campaign 12 months or so ago, called “It's About Bloody Time”, which drew attention to the fact that long, complex gynaecological consults by specialist gynaecologists like Dr Wratten were remunerated under the Medicare Benefits Schedule - or the MBS - at a fraction of the rate a middle-aged man like me might be remunerated, for going to a cardiologist. And I'm delighted that we were able to get rid of that inequity and substantially increase the MBS rebate for complex gynaecological consults by specialist gynaecologists.
So we've been doing a range of things, but it is extraordinary to me that the last listing on the PBS of a new treatment for endometriosis was 30 years ago. 30 years ago. And the most common PBS drug that is prescribed for endometriosis was listed in the 1980s, the same year the Berlin Wall was torn down. So I'm so delighted today to announce that a cutting edge treatment, Visanne, is finally being listed on the PBS as of today, and will be available at affordable prices for many, many thousands of women, and provide a range of different types of relief - not just relief of symptoms, but also fewer or less frequent surgeries, which Dr Wratten will talk about. This is all about providing cheaper medicines and cutting edge treatment to Australian patients, generally, but in the area of endometriosis, which has attracted such inadequate support for hundreds of thousands of Australian women, this listing is beyond time. I might hand over to Dr Wratten.
GYNAECOLOGIST AND ENDOMETRIOSIS EXPERT, ST ANDREWS HOSPITAL, DR NEISHA WRATTEN: Thank you, Minister Butler. Good morning. It's the first day of summer, and that's appropriate, because it's the first day of summer for many Australian women with endometriosis, and it's really a day for celebration. I was among the first gynaecologists in this country to prescribe Visanne, having heard about it overseas. And it's been a two-edged experience for me. It has been a relief and a satisfaction to be able to offer to women a well-tolerated and highly efficacious treatment that relieves their pain, returns them to an excellent quality of life, and reduces the need for repeated surgeries. But it's also been distressing to see many women have to decline the treatment that they deserve, because of cost. Especially during the recent times of COVID when access to surgery was restricted, and in the current financial climate, when women put their needs behind those of their families. So I would like very much to congratulate Minister Butler and his government on this landmark decision. It is going to impact, I estimate, between 400,000 and 500,000 Australian women in a positive manner. Not only them, but also those who support and care for them. So, thank you very much, Minister Butler.
PATIENT LIVING WITH ENDOMETRIOSIS, LAUREN JEFFRIES: So my story: it's been like, a journey. I was diagnosed around 21 years of age. It's been very frustrating, mainly due to the general lack of education in the general public. And also having to wake up every single day in pain and just think “this is how it is and how it has to be”. When I got put on Visanne, about seven or eight years ago, it's been - it's completely changed my life. So, some days I even forget that I have it. I can just live a normal life.
JOURNALIST: Has it ever got to a point where you like, “how am I going to afford this?” You know, this is quite an expensive treatment.
JEFFRIES: It's just something that I just had to do. The fact that it's cheaper now is going to be very helpful for a lot of younger women.
JOURNALIST: How long did it take for you to get your endo diagnosis?
JEFFRIES: So, it thankfully for me, it only took about six months. So, I know with a lot of women out there, it takes, on average, about seven years. So, they go through that long process of being obviously brushed off, or many other reasons. But yeah, for me, it only took about six months. So, Dr Wratten here, we had one surgery with her.
JOURNALIST: Do you think they need to see more awareness about the issue?
JEFFRIES: Absolutely. Yeah, there has to be a lot more awareness. So, what I would like to see happen with endometriosis is that: whenever I ask or tell someone that I've got endometriosis, I always follow it up with, ‘do you know what that is?’ So my number one goal, and what I'd love to see happen is that I can tell someone I have endometriosis, and they know what it is. Not only do they know what it is, but they know how it affects women and how many women suffer from it. And that I don't have to feel like I'm responsible on educating the public on something that should already people should already know about.
JOURNALIST: Does it feel like it is ‘about bloody time’ that you know such a treatment like this that you say is so successful, is subsidised?
JEFFRIES: Yes, it is about bloody time! For sure. If it can help a lot of other women, the way it's helped me, even if it helps one woman, it would be worth it. Because, honestly, it's been - as clichéd as it is - lifechanging for me.
JOURNALIST: We heard from the doctor before saying it'll benefit around 400,000 to 500,000 Australian women. What's that going to be like for those women now that this is available?
JEFFRIES: It will be amazing for them. I think it's a symbol of hope for us, you know, and there's so many women that I know suffer from it. So, seeing one of my good friends at work collapse and have to get taken out on a stretcher and go to hospital, it's not very nice to see. I feel like I'm lucky because I'm on this drug, because I really don't suffer from much pain at all anymore, and I live a mostly normal life. Which is just strange to think, because I never thought that I'd get to this point. But that's what this has done for me. So, if that helps all these other women out there, then that would just be amazing.
JOURNALIST: Can you talk a little bit about, like, before diagnosis, the pain and kind of what day-to-day life was like for you?
JEFFRIES: Yes. So, my symptoms: I had pelvic pain every day. So, it didn’t ever go away. So that caused a lot of fatigue for me. So, I was always obviously very, very tired. One of my family members said to me that I always looked bit unwell. So, for me, though, I just remember waking up one day and I sighed - like really loudly - and I was like, ‘this is this is just how it is, now. I can't change it.’ And I always said to myself, I'm never going to let it impact my life or stop me from doing what I wanted to do. So, the pain is there everyday. I just had to go to work, talk to people, do everything just as normal. Because talking about it … well, people don't understand, then sometimes you just feel like, kind of, ‘what's the point?’ Yeah, it was just always, always there, but you just had to just go on and live like that.
JOURNALIST: So to clarify, you've had one surgery?
JEFFRIES: Yes.
JOURNALIST: And when was that?
JEFFRIES: That was when I think it was 21 or 22.
JOURNALIST: And how old are you now?
JEFFRIES: 31.
JOURNALIST: And being on Visanne has prevented you from then needing any further surgery?
JEFFRIES: I believe so, yes. That's probably a question more for Neisha, Dr Wratten. But yeah, the fact that I've only had one surgery - like the friend I was talking about before, she's I think, 22 and she's had probably three or four surgeries already. So once again, I feel very blessed by the fact that I was obviously paired with such an amazing doctor here, to only have one. Because I just hear about so many horror stories: about women that just actually keep having more and more, and then they end up being in more pain because of, like the scar tissue from the result of that, as well. Not to get technical here, I'm probably not the best one to comment on that kind of thing. But yeah, with one surgery, and being on Visanne - none of us women are lucky to have this, but I feel lucky because I feel like I'm in the best position I can be, because of this drug and what it's done for me.
CO-FOUNDER OF ENDOACTIVE, SYLVIA FREEDMAN: Minister Butler and Dr Wrattan, I just want to thank you all for taking this condition so seriously and being here today. Minister Butler, for your commitment to improving the lives of women with endo. My name is Syl Freedman, I'm a co-founder of EndoActive. We're a patient group, and I've also lived with the symptoms of endometriosis since I was 11 years old. I wasn't diagnosed until the age of 21 and that delay in diagnosis is something EndoActive is really trying to close that gap. When I was diagnosed at 21 I'd never even heard of endometriosis and as Lauren said, we need people to not just know the word, but what it is and the impact of on the lives of patients with endo. I started to share my story on social media at the age of 23 and my inbox was very quickly overflowing with messages and letters from people who were just desperate, desperate for help, people who were struggling to cope and really felt that they were not able to be themselves and live a full life. I heard thousands and thousands, I've read thousands and thousands of horrific stories from girls as young as 8 years old, living in agony or being told to go and have a baby to cure their endometriosis, sometimes by health professionals, unfortunately, up to women in their 80s who are still suffering. That's one of the things that really drove my Mum, Leslie, and I, my co-founder, to start EndoActive and to advocate for the thousands and thousands of people, or the millions of people with living with endometriosis. I just want to say that the listing of Visanne on the PBS is a fantastic step forward. We are so appreciative of the collaborative approach between patient groups like EndoActive, between the federal government and also between companies like Bayer. We really do all need to work together and this is a wonderful milestone. Anything that we can do to lower the cost of endo for not just for individuals, but for the Australian economy. We've got a national financial burden of over $10 billion a year that costs Australians. So, anything that we can do to lower that cost, I think would be really beneficial for individuals, for patients, and for our country as a whole.
I just also want to say that while this is a moment to celebrate, it's also a moment to reflect. We've come an incredibly long way, and I'm very, very proud that in the 10 years that EndoActive has been running, we've got a national action plan for endo, we have millions of dollars of funding by government, and recognition and validation from politicians, the public, the media has been phenomenal. There was no mention of endo in Australia media at all 10 years ago, and now we're reading about it every day, so that is fantastic. We still have a long way to go in taking women's pain seriously, making sure that if you present to the emergency room with a pain flare that you won't be turned away because endometriosis pain is real. It's not just period pain, and it must be taken seriously.
JOURNALSIT: Are you on Visanne yourself?
FREEDMAN: I was taking Visanne. I'm not currently, but yes, I took that drug for four years.
JOURNALIST: Can you explain for us what Visanne is, how it works and how it helps?
DR WRATTEN: Visanne is one of the class of drugs they call progestogens. It means it has some similarity to the progesterone hormone that's produced by the female body in the second half of a normal cycle. It's not exactly similar, which is why it's called progestogen, not progesterone. It works by stopping ovulation, and stopping ovulation is key to preventing endometriosis recurrence. The progestogens are also very important, because they also modulate the immune system, to a certain degree. So, there are two mechanisms by which this drug can actually work. It's taken as a single dose every day, it's well tolerated, and it doesn't have the same long term biochemical effects that some of the other classes of compound actually do, with this medication. The other medications that we've had on the market have been limited, because of the side effects. Some of them have been highly effective, but the side effects mean that over half the women won't continue taking them, or they can only take them for six months, because they have other deleterious effects. Visanne is different, in that it is well tolerated. It works for over 80% of women, and it can be used long term. There have now been several studies published on its use for several years. And in my practice, we commonly use this drug long term. We monitor patients for any side effects, and so far, we've had very few problems with its long-term use. So it's a very, very important drug to have accessible to all women with endometriosis, regardless of their stage of the disease, regardless of where they are in their reproductive lives.
JOURNALIST: How can it be accessed? Is it a matter of just being able to go to the GP, or do they need to see a gynaecologist?
DR WRATTEN: At the moment, GPs can prescribe it on private script as well as gynaecologists. Under the new listing, anyone will be able to write a prescription for Visanne, which is fantastic. Because access to medical professionals can sometimes be a little bit difficult. It's been great in my practice, in that we are seeing, like Lauren, fewer and fewer patients needing to have repeat surgery. And until we had something as well tolerated as Visanne, often the only recourse for a lot of gynaecologists was to do repeat surgery. Now we know that that, in itself, can develop chronic pelvic pain, which can be debilitating and can impact on women in a lifelong fashion. To be able to reduce the number of surgeries that we need to do is really a very important thing for women and their future health.
JOURNALIST: So Visanne is a bit of a wonder drug, in a sense, isn't it?
DR WRATTEN: It was a wonder drug, when I first started prescribing it, and started seeing women coming back for a three month review and reporting that their symptoms had either completely disappeared or been reduced by over 50%, with a further reduction in the next three month interval. It was literally miraculous. I still pinch myself sometimes about it. I still pinch myself when the women come back and say how wonderful they feel.
JOURNALIST: Can I get you to describe endometriosis?
DR WRATTEN: Endometriosis is a condition where you see deposits of tissue that look like, under the microscope, the same blood that women shed during a menstrual cycle. Now there are very subtle differences in this tissue at a very, very sub-microscopic level, which mean that, instead of resolving, it implants and it grows. The tissue is metabolically active. So what I mean by that it produces factors that create pain. It can stimulate the ingrowth of blood vessels. It can stimulate the ingrowth of ‘C fibres’, which are the pain transmission fibres. It can cause scarring and cause distortion. In a third of women, it can cause infertility, sometimes through mechanisms that we don't understand, but often by scarring and destruction of tissue. It's an inflammatory condition. And what is important to remember is that it's not just confined to women's genital area. It is linked with other conditions. Women with endometriosis have a higher risk of autoimmune diseases, based on the prevalence studies. They have double the rate of asthma and allergic disorders. And that's not only based on international work, that's based on my own audit here in South Australia. The other concerning issue is that it may be associated with a higher risk of cardiovascular disease. Cardiovascular disease is still the biggest killer of women in our country and a cause of chronic debility. If we can predict which women are more at risk, then we can do something to then try and reduce the impact of many other diseases.
JOURNALIST: Minister, why has it taken so long for this drug to – why has it taken 30 years to get to this point today?
BUTLER: This drug, as I am advised, was first approved for use in Australia about 10 years ago. As soon as we were able to, after we received a positive recommendation from the medicines experts – the Pharmaceutical Benefits Advisory Committee – and we were able to secure a pricing agreement with the sponsor, which is Bayer, we've been able to bring this listing to the PBS. But we do have before us, I think, a range of recommendations about how quickly we are able, as a country, to get access for Australian patients, in this case, Australian women to the world's best cutting-edge treatment at affordable PBS prices. Now, in the last couple of years, we've been able to list almost 280 new cutting-edge treatments like this one. So, we're working very hard to give Australians access to the world's best treatment at affordable prices. But we're at a period where there's a huge number of new medicines coming onto the market, and I have before me a range of recommendations about the way in which we can improve those assessment, approval and reimbursement decisions.
JOURNALIST: Are there any other endo treatments or drugs being considered to be subsidised on top of Visanne?
BUTLER: I'm not aware of any off the top my head. Dr Wratten might be but I'm not aware of any.
DR WRATTEN: Yes, there are. To go to answer that I need to go back to the science a little bit. How the drugs interact with the individual cells. There have to be protein sites on the cells where these medications bind to. Now in endometriosis cells, there is an abnormality of the site we call the progesterone B receptor. Now that abnormality means that for about 20 per cent of women, the progestogens aren't going to work. We therefore need to look at other classes of drugs of which, the last which came on the market was 30 years ago. That would be the GnRH agonists, which are very effective while you use them, but they're limited because they can only be used for six months because of their effect on bone density. There are new medications that are available overseas for the GnRH antagonists, of which there is one available on private script in Australia, and it would be also a useful adjunct to have available for Australian women to utilise. It's my belief, with a lot of medications, that your best chance of getting a woman to find the right medication and be able to persist with it long term is to have a variety of medications. Not one medication is going to suit all Australian women. So yes, we do look forward to consideration for other medications coming on to the market. And in general, it is good to see the process by which medications are introduced onto the PBS being made easier to act, to negotiate.
JOURNALIST: It takes on average seven years to get an endo diagnosis, partly because of the lack of awareness in the medical industry. Do you think more needs to be done to create awareness?
BUTLER: Absolutely and Syl talked about the work that her organisation has been doing to lift community awareness. The media treatment of this condition has dramatically changed in recent years. You see it now as a feature of advertising campaigns by commercial organisations, which, again, was unknown only a couple of years ago. We're doing what we can as a government to lift community awareness, to lift awareness among health professionals. We have funding for general awareness campaigns. We have funding for training for health professionals, particularly GPs, who are the front line for so many patients. They're the first point of call for so many patients, and unfortunately, often the place where the diagnosis doesn't happen when it should. We're doing more training of health professionals, and we have a process to put in place a cutting-edge endometriosis management plan, which will be able to be used by health professionals across the country as well.
To your earlier question, though, my understanding is that on private script this this drug costs around $750 to $800 a year. From today, it will now be available at PBS prices that could be as little as $7 a script for concessional patients, or $31 a script every month for general patients as well. Those prices will be frozen next year because we recognise the cost-of-living pressure households are under as well. Can I say that over time, I expect that this drug, Visanne, would be precisely the sort of drug that would be considered for the list of 60 days scripts, particularly given that it can be prescribed for years and years, as Dr Wratten has pointed out. We're determined to make these PBS medicines as affordable as we possibly can.
Thanks everyone.