Dear Menopause
Are you experiencing changes to your physical, mental and emotional health you find hard to explain?
Have you tried talking to your doctor/partner/employer/best friend and been left feeling unsupported?
In this weekly show, host Sonya Lovell interviews a range of experts and shares the stories of everyday people to help you understand what the hell is going on, why and where you can find support, empowerment and most importantly, a like-minded community.
Dear Menopause
104: Hot Take with Sonya and Johanna
In our first Hot Take of 2025, Sonya and Jo share updates from Australia's Pharmaceutical Benefits Advisory Committee and how consumer advocacy was pivotal in the PBAC's decision to recommend Estrogel, Prometrium and Estrogel Pro for the Pharmaceutical Benefits Scheme.
With a personal milestone, Sonya shares her new role as the ambassador for Menopause and Cancer in Australia and New Zealand. This initiative seeks to fill the glaring void in post-cancer menopause care, echoing alarming statistics from the UK where the majority of women receive no support.
Johanna highlighted actionable insights in "A Citizen's Guide to Menopause Advocacy: Simple Steps for Transformative Change. " Discover how this free-to-download guide, featuring a foreword by Maria Shriver, empowers individuals to drive change.
Explore how you can advocatefor change during this pivotal period, despite the delayed government response to the Australian Senate Inquiry into Perimenopause and Menopause.
We also touch on the recent paper published showing the interindividual variations of the absorption of estrogen in the real world. Results of the study showed that 1 in 4 women using the highest licensed dose showed levels considered subtherapeutic as a result of poor absorption.
So much to unpack this week!! Enjoy.
Links:
A Citizen's Guide to Menopause Advocacy download
Estrogen Absorption paper published 17 December 2024
Menopause and Cancer
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Welcome to the Dear Menopause podcast. I'm Sonya Lovell, your host Now. I've been bringing you conversations with amazing menopause experts for over two years now. If you have missed any of those conversations, now's the time to go back and listen, and you can always share them with anyone you think needs to hear them. This way, more people can find these amazing conversations, needs to hear them. This way, more people can find these amazing conversations.
Sonya:Welcome to Dear Menopause and this week we have a hot take episode. Joining me is my Johanna Wicks. Hey, jo, so good to be here again. Are you excited? I'm very excited. As a refresher for anyone that's forgotten because it was a month ago, or for anyone that hasn't listened to a hot take episode previously, joe and I are going to talk about kind of the what's hot in the menopause space in australia right now and globally as well. But really focusing on australia, break down what that means for you as a consumer, which is just an awful term you as a woman in australian society that is likely to be impacted by perimenopause and menopause. So last episode we finished off talking about the PBS and different HRTs, why they were on the PBS, why they weren't, and we were waiting for an announcement from PBAC, which is the advisory committee deciding which meds do go onto PBS about Prometrium yes and Estrogel Yep and Estrogel Pro yes, which is the two combined as one prescription. Okay, jo, tell us what happened.
Johanna:So it was very exciting. I think the results came out on the 20th of December, so right before Christmas, and obviously there's lots of women, I think, that have been waiting on this outcome because none of these products have been listed on the PBS. They're available in the private market but that does mean that they're a bit out of reach for a percentage of the population, which really plays into inequity of healthcare. So the Pharmaceutical Benefits Advisory Committee published their results from their November meeting on the 20th of December and the PBAC outcome I'll actually read it out because it's so exciting was the PBAC recommended the listing of Estrogel Metrium and Estrogel Pro as general schedule unrestricted benefit listings. The main thing they said this bit really resonated with me was that the PBAC noted consumer comments stating it was important to have a range of MHT options available on the PBS and that these products were effective in managing symptoms of menopause and provided benefits compared to other PBS listed MHT products.
Johanna:In the context of limited clinical evidence, the PBAC found the consumer comments particularly useful in articulating patient-relevant outcomes, especially from those people currently supplied these products on the private market.
Johanna:This is a great outcome. This means that the products move to the next stage of the PBS process, which I'll get to in just a second. But I think what's really exciting about that particular comment is it shows how important that we as consumers are when we engage with the healthcare system. So as part of the PBS and PBAC process, there is an opportunity for consumers to comment on any drugs that are put up, and obviously you know the pharmaceutical company puts in a massive dossier with all the evidence and why they think it should be on the PBS. A lot of doctors will often respond as well and indicate why they think it's important. A lot of doctors will often respond as well and indicate why they think it's important. But it's the voices of consumers which I think is so critical sometimes in this discussion, because it's those lived experiences of medicines and how they impact us that can often be missed, especially if there isn't a lot of clinical evidence.
Sonya:Yeah.
Johanna:So what this means.
Sonya:That was also so evident, which we've talked about before as a part of the Senate inquiry. You know, the senators said when they handed down their report how their findings were so driven by the submissions and the hearings that came from not just the medical profession but from patients and women and consumers themselves. So, yeah, huge. But one of the things we are going to talk about today is actually how you can be more of an advocate in this space and use your voice. So, now that we know that, that was the outcome from PBAC, but there is a next step before we see anything actually added to the PBS. Talk us through that.
Johanna:Yeah, so what happens now?
Johanna:So the first hurdle in terms of this product being listed, has occurred because it's been recommended.
Johanna:The second hurdle, which we did talk about in our previous hot take, which is that complicated outcome as to whether or not PBAC recommends that it's compared to the lowest price product that is, similar on the PBS, the lowest cost comparator, or if they're willing to have negotiations with the pharmaceutical company.
Johanna:So I think in December we had talked about how there was a recent contraceptive pill which was recommended, but recommended at the lowest cost comparator, which we spoke about in detail. Excitingly for these products, for these modern MHT products, they have indicated that they are willing to go into price discussions, and so what that means now is that the Department of Health and the pharmaceutical company who put up the products, which is Besson's, will start a discussion on price, and that can take a couple of months, and what it requires, basically, is it requires the Department of Health and the Australian Health System to recognise that these are modern medicines and that they need to be remunerated in a way that ensures that the producers of the product, you know, are covering their costs and, you know, as a private company, making a profit, making money, but also requires the pharmaceutical company to come to the table and be realistic about what price they can expect this product. Yeah, so this is a really exciting outcome it really is.
Sonya:Um, you know, I know you and I were both hugely excited on the day when we found on the website pbac website that they, you know made they published the findings that we all dove in there and had a look and then got super excited. I got a wonderful email from the team at Beesons that same day acknowledging the work that you know advocates within the community had done to get us to this point. So they were incredibly grateful for everything that you know was being done to support their drive for this to happen, but also acknowledging that, yeah, now they're in that step of negotiating on price, which you know is great that they've even opened those doors to do that for us. So huge, huge.
Johanna:And it actually says in the PBAC document. It says the PBAC recommended listing of the three products at a price it considered acceptable in the context of uncertainty in the magnitude of benefits. And I just wanted to add a little addition there. And, you know, I think maybe we can park this for a hot take next time, sonia. This again comes back to stuff that we've alluded to before which is around evidence they actually talk about in the PBAC summary, in particular, that the PBAC considered the claim that micronized progesterone has a lower breast cancer risk compared to mediproxen acetate, mpa, which we have also talked about, was uncertain. So again it comes back to you know we keep coming back to there's a lack of good, robust clinical evidence with so much around these drugs and women's bodies and women's healthcare. What that indicates is that there's more advocacy to be done on research, which we're going to get to shortly. Yeah, now we've got to watch this space to see if and when these products make it onto the PBS.
Sonya:Yeah, and so we would expect an announcement, obviously sometime this year. We're only at the start of this year, but we will absolutely keep you updated on any movement in that space and anything that we hear in regards to the outcome on that. So great news, but still a little way to go. All right, let's move on to now. I'm going to take over the controls here for a moment, and I would like us to cover the announcement that I made a couple of weeks ago that I am now the freshly minted and very first ambassador to Australia and New Zealand for menopause and cancer, which is a UK space charity.
Sonya:I have been in conversation with them for gosh well over 12 months now. I first met Dani Binnington, who's the founder right here on Dear Menopause, when she agreed to be interviewed, and we've kept our lines of communication open. Towards the end of last year, I reached out and said hey, look, we really have a need for services that you are already offering so successfully in the UK. Here in Australia and New Zealand, I would love to be a part of that, and so I have joined the Menopause and Cancer UK team as their ambassador across Australia and New Zealand, which is really exciting. These are services that have not been offered in Australia, and New.
Sonya:Zealand before to women that have experienced menopause as a result of cancer, and there are many cancers that can actually lead to menopause. It's not just breast cancer. Often we kind of think that it is because it's probably the most popular and highly talked about. But you know we have to factor into that women that are impacted by gynecological cancers. A lot of blood cancers can also the medications and treatments for that lead to a menopause as well. So this is a very holistic organization that takes into account anybody in the community that has been impacted by menopause and cancer. So that is an exciting announcement.
Johanna:This is really.
Johanna:I mean, sonia, this is so exciting because I think this could not have happened at a better time.
Johanna:When you think about, you know, so many of the submissions that we saw in the Senate inquiry last year, the fact that you know we have a number of recommendations, the fact that you're going to take on this role now, at this point, when there is, I guess, still quite a lot of advocacy to do to make sure that those recommendations become reality, means it could not be a better time for that you know quite significant cohort of women who experience menopause as a result of cancer and cancer treatment, to make sure that those voices are heard.
Johanna:But I think also, I think what's going to be really critical in this process is hopefully, you know, maybe we move towards some national guidelines around you know, menopause treatment and care is ensuring that those voices and the treatment protocols for people who have suffered from cancer get included. Because what I keep seeing I keep seeing, I mean probably almost daily on my social is women who are talking about how their medical professionals in their care after cancer don't talk about menopause. It's not really factored in, which really surprised me, given it's well, now it's 2025.
Sonya:Yeah, oh, I know it's absolutely disgraceful. One of the reasons I just reached across and grabbed my pad and paper was I was having a conversation with Danny during the week earlier in the week, and we were talking about some of the stats and data that we can extrapolate across here to our community that they have gained from their community in the UK, and they surveyed their community and 90.4% of their community came back and said that they had received zero help when it came to their menopause as a result of cancer.
Johanna:Not 94%, four that's. I mean, that's quite hard to get your head around that you're talking about women, and something that's so inherently important is you know how we, how we live in our bodies and how we function, and you know thinking about whether you you know might want children or have children, or you know. To not have that discussion just seems well. It seems like, sonia, you're going to have your work cut out.
Sonya:It does. I know Dani and I were going back and forward on something over the weekend and you know she asked me a question about where, if you are in cancer treatment here and you've experienced menopause as a result, like who within your team do you reach out to for support? And so you know I kind of answered that and then she was like okay, now I want to know how likely they are to get that support. And then I did this big dump. Basically, it comes down to in many respects being a postcode lottery of you know. Do you live in the city versus? Are you regional? Are you rural? Are you public patient? Are you a private patient? What budget do you have available to you to spend on specialists outside of the cancer care? You're already getting so many things.
Johanna:And then my last sentence to her was we have so much work to do thinking about that, yes, but in terms of looking for the silver lining, now is the is the most optimum time to be having that, because we know that the government is thinking about what they're going to do in this space and we also have an election coming up, so that, I think, is a really good point in terms of the advocacy that you're going to be able to do in this role, which is also one of the other things we wanted to talk about it was.
Sonya:But before we jump, I just want to also just finish up with. You know my role here is not going to be just advocacy. Advocacy is going to be a big part of it. That's a big part of who I am. But what is most exciting to me is we will be bringing the services that the UK deliver now to the community, which are educational and awareness raising, in person, online, and, you know, we'll create a community network across Australia and New Zealand.
Sonya:I've already had so many community members reach out to me saying how can I help? This is where I live. So you know we're going to be organizing coffee mornings where people can get together and have a conversation with someone that's experienced exactly what you're experiencing. We've got a huge global Facebook community already. We won't be creating anything new. We'll just be folding everybody into that one, because the issues that everybody faces are the same. It doesn't matter where you're situated or based, and there's a brilliant community in there that is always jumping in and answering everyone's questions and providing support when people need it. So, yes, advocacy is going to be a part of it, but there's also going to be a huge part of providing support and community and education and access to experts as well. That's a part of the workshops we'll be running, and we'll be announcing all of that very, very soon, so that people will know what to expect. So that's it. I have wrapped up my pitch.
Johanna:That was what I wanted to say I think you're going to probably be inundated with, you know, people wanting a guidance. In a way it's you're probably going to need, yeah, like a, like a pathway of like where to go for information and who to see. And I mean, I already know, like even from the in the menopause space over the last couple of years, I still get contacted by people saying can you recommend any good doctors in, you know, new south wales or the hunger for detailed information is huge and because you're filling a massive void in Australia, you'll be prepared to be busy.
Sonya:I am prepared to be busy and excited to be as well. All right, so let's move now on to the next topic that we're going to talk about, and that is advocacy. Jo, you brought this to my attention. I hadn't seen it until you brought it to my attention, so why don't you do a quick spiel about this amazing guide?
Johanna:Yes. So I saw this on one of the global medical professionals whose Instagram I follow, mary Claire Haver. It's called A Citizen's Guide to Menopause Advocacy Simple Steps for Transformative Change, and it is brilliant. So Dr Mary-Claire has worked with a couple of other people and developed some steps which help the individual, the person on the street, have a better understanding of how they can advocate in this space.
Johanna:One of the things on the front there's like a little snapshot of it. It looks like a text message or a note, and I just really love it because it says, with the advent of social media, the flow of information has been democratised, and I think that's one of the things that excites me the most about living in this age with all of the social media, that it is possible to create a community and drive change without ever happening to meet anyone in person. This Citizen's Guide to Menopause Advocacy it has an incredible foreword by Maria Shriver which just you know it just made my heart sing. It also made me go. I want a journalist like that in Australia to, you know, kind of take this movement and do similar things. It was really powerful. But the other key thing is it then lists its policy goals and gives examples of how to achieve them, and the thing that struck me reading it, sonia, was the policy goals are pretty much the same as the policy goals that we would like to achieve here.
Sonya:That was my exact thought. Like I jumped into it. It's an online downloadable PDF. It doesn't cost you anything. It's 37 pages. I've got it open on my computer right now Super accessible, jam-packed with information. But that's the first thought that I had. As soon as I scrolled to the table of contents, I was like, oh my gosh, but how good is it that, globally, without collaboration, we are all on the same page.
Johanna:I know that's exactly what struck me. In fact I was like, oh, this is quite similar to. You know some of the policy goals that we had put together, a group of us, a consortium of us put together in a budget submission to the Australian government just over 12 months ago. But very quickly, I thought I'd just read them out, so you've got you know. Policy goal one reset the record about menopause hormone treatment Yep. Policy goal two catalyze a modern, equitable menopause research agenda.
Sonya:Yes.
Johanna:Policy goal three update and mandate menopause education for providers. That one's needed. Policy goal four make menopause treatments affordable. Well, we've just talked about that. Policy goal five make menopause treatments free of outdated warning labels. We've also spoken about that. And policy goal six ensure meaningful workplace interventions. I mean these are pretty much also reflected in the Senate inquiries recommendations and they're all really doable. Yeah, which is also exciting. You don't read them and go. That's never going to be achieved. No, exciting, you don't read them and go.
Sonya:That's never going to be achieved. No, and what I love is that then, after for each of those policy goals, they give a little one pager, if you like, that has a take action kind of call to action on it. So this is what you can do Now. Do keep in mind this is written from an American perspective, so there is a lot of American links and referring to American organizations. I was like we need an australian version of this. That's exactly what I thought too.
Sonya:Sonia hello, anybody wanting to fund us to put that together, reach out. But yeah, so do just go into it. If you do download this and have a little think about you know where you can actually use some of this information and just translate that into you know what exists here in Australia, because an equivalent will exist. And until we do get the opportunity to update this for Australia, it would be amazing to just for you to work out who it is in Australia that takes the place of the American body that they refer to. But great, recommended action steps. How to do that, as just somebody in the public that's invested in seeing a change in this narrative and in this situation that we find ourselves in?
Johanna:And I think you know I often also see in social media, I mean all the time actually, you know people commenting and saying what can I do to help? How can we get this on the agenda, you know, and so this is actually quite a great tool, and is it the kind of thing you could link in the show notes?
Sonya:Sure, good question. It absolutely is Wonderful. So yeah, I will definitely have a link to this in the show notes and, as I said, it's literally just a PDF download.
Johanna:And I think it's you know I would love to see an Australian version. So yes, let's see if we can. You know if someone would like to generate such a document. But one of the other things that did make me think, like in terms of the Senate inquiry and I did want to this kind of wraps in really nicely, sonia is we were hoping to hear from the government, I think on the 18th of December, to respond to the Senate inquiry recommendation. So the government originally, after any Senate inquiry is tabled, they have three months to respond. Unfortunately, the Albanese government has not yet responded, which is really disappointing. I'm going to give them the benefit of the doubt and go with. It's because they're so busy coming up with how they're going to implement all the recommendations that they want to make sure they've gotten it all right before they respond.
Sonya:That's a great way to look at it, jo, but you know I've been inundated with messages from people actually going hey, just wondering, did I miss the announcement about the Senate inquiry report? And I'm like, no, sorry, you didn't. It's just not come down yet. So, yes, we're waiting. If you're listening and you are at all in control around this, please know that we are waiting with bated breath there's a lot of women.
Johanna:There's a lot of women waiting for the answers on this and uh, now, what was my train of thought with that? It was so, in terms of advocacy around that, one of the things that you know I'm I'm now thinking about. Well, what can we do to ensure that this doesn't just? You know there's an election looming. We don't want this to drop off the government's agenda or to go. We're about to go into an election, this isn't a priority and then it disappears and you know there could be a change of government. We want some action before we go into this election phase, before we go into this election phase.
Johanna:So you know, thinking about what you could do if you were listening. You know there are some simple things like write to your local member and say I was following the Senate inquiry. My understanding was the government was due to respond. Could you advise me as to where that's up to? If your local member is not a Labor member of parliament, well then you could put it onto the coalition or the Greens agenda and say could you follow this up for me? What is your party's response? Now? The Greens, we know already did have responded to the recommendations, but we haven't heard anything from the National Party, the Liberal Party or the Labor Party at this point. So you know you can write and ensure that your elected representative knows that this is important to you and if you think about how many menopausal women there are, if we all wrote that would be quite a lot of correspondence and would also make them realise that this is something that is relevant coming into an election.
Sonya:Yeah, hugely relevant and we hold 51% of the vote.
Johanna:Yeah, that's pretty amazing. So, and I think you know, I think the amount of women that are actually in the menopause transition is about 3 million, but it's even bigger if you kind of you take it outside the kind of traditional age that is considered menopause. So that's a, that's a lot of women with a lot of voting power.
Sonya:Yeah, we do. We hold a lot of power and we need to really lean into that for want of a better expression, and start, you know, using our voices.
Johanna:Yeah, and you know, one of the other things I had seen over the summer break not that I was spending a lot of time on the socials, but I don't know if you saw it, sonia was Dr Louise Newsom had some research published. She did, yeah, so it was a team of you know doctors and researchers.
Sonya:I know Rebecca was also involved, who works closely with Louise. There's a big team of um. You know doctors and researchers. I know rebecca was also involved, um, who works closely with louise. There's a big team of them. But yes, there was a fantastic paper published on the um.
Johanna:It was all around the absorption of estrogen yes, um, and I'm just trying to find it.
Sonya:I had it open before so I've got it open here. So the aim of the study was to explore the range and variation in serum estradiol concentration and to estimate the prevalence of quotations, poor absorption in perimenopausal and post-men or women using transdermal estradiol in the real world. So, yeah, this was really interesting because if you closely follow this conversation, you will know that there has been some talk, some very loud talk, around the overprescription, particularly of estrogen. Is it a good thing? Should it be happening? What does it mean? Why do they do it? Is it off-label, is it on-label? Why, you know. And so this paper really addressed and the outcome of it really showed that every single woman or person that uses transdermal estrogen, whether that's a patch or a gel, but I think this was predominantly done on patches Is that right? I think? It was all I think it was all it was all Okay, cool, do absorb at very, very different rates.
Johanna:Yes, and what I think is really interesting about this is, you know, there has been a lot of grumbling, I think, or outright not very you know unpleasantness over the last 12 months and, you know, frankly, a bit of a witch hunt against Dr Louise Newsome by some in the menopause space around the fact that she is prescribing outside the recommended doses. A lot of doctors have come out and been quite vocal about the fact that actually they prescribe outside the recommended doses because of this exact issue, when they actually test levels that they find that women aren't absorbing, and the conclusions of this paper actually talked about that. There is considerable inter-individual variation, and I think what this means is. It does come back to individualised care, and I noticed that Professor Kulkarni was recently quoted saying that it's important to focus on patient care, not ideologies. Evidence from scientific clinical trials is important, but so is the art of medicine, which is all about clinical experience, listening and providing compassionate care. I think that really lies in this example as well, and one of the other things that really struck me, because it was reflected in Australia, is Dr Kelly Teagle, who runs WellFem, which is Australia's first and largest telehealth clinic, which is just for menopausal care. Kelly founded WellFem five years ago, so she was at the forefront of this movement long before anybody else and, as a GP, had realized that there was this massive gap that was happening for midlife women. She actually did a post three months ago on this exact issue and she was saying that you know, all she sees is menopausal women. That is her sole client base.
Johanna:So if you think about Louise Newsom and Kelly Teagle when they are specialists in menopause, so the only patients they see are menopausal patients. They are the ones who are going to see the patients that are, so the only patients they see are menopausal patients. They are the ones who are going to see the patients that are outside the curve, that don't fall into the norm. Because there'll be women that approach their normal GP, aren't getting the care that they require or their GP is not confident. Who'll go to Kelly or Louise?
Johanna:And she actually said there are plenty of menopause doctors, myself included, who prescribe more than 100 milligrams of estradiol per day because we have patients who aren't responding to lower doses. That is using clinical judgment, not irresponsible prescribing, and I think that that's one of the things that you know often gets missed is that if you're seeing 100% of patients with the same condition. You've got a different perspective than someone who might see a menopausal patient twice a week and I think you know that. The fact that Louise Newsom has managed to collect all of her data and actually do the tests and get the blood results is extremely useful for prescribing going forward and hopefully will make doctors feel more confident that actually, if they have a woman that's not responding, there is now evidence to show that they can do a blood serum test and see if absorption is happening. So I think it's a really exciting addition to the clinical landscape.
Sonya:Yeah, it's great and it also ties into something we've talked about on here before but has also had a lot of publicity recently, and that is the shortages of the patches in Australia. And you know, when you compare the absorption of gel versus the absorption of patches, there is a huge amount of significance. You know there's different levels of nuances for every patient as to whether the gel is going to work for them versus the patch. You know I had a conversation recently with one of the cancer organizations that I've been talking to about menopause and cancer in collaboration and they had run some workshops recently where they'd actually got some of their community in to talk about the support that they needed from a menopause perspective, because it wasn't a conversation they'd ever had with them before, and one of their community members had mentioned how she wasn't able to get patches, so her doctor had put her onto gel.
Sonya:There was a couple of issues that I saw with this situation, but the most important one was that she was a young mum.
Sonya:She hadn't been given instructions on when to use her estrogen versus when to use her permetrium in terms of across the day, so she was putting her gel on at the end of the day after she'd had a shower, but she found then that she wasn't able to go and pick up her baby straight away afterwards because of that. It transfers across, like the gel sits on your skin. I use the gel. It sits on your skin like a really heavy hand sanitizer and it takes some time to absorb in, so you have to let it dry. If you don't, then anything you touch, or particularly another human or even a pet some people get concerned about their pets will transfer across to them, and so she was in this great predicament where she was not able to put a gel on because she then couldn't go and pick her baby up, and I was like this is why it's so important that we have access to patches versus gel for those that need either the different absorption rates or they can't have that cross transfer.
Johanna:Yeah, and I think that that's, you know, a really good point, because you know sometimes. You know sometimes on a hot day it might take three minutes to dry, but on a cool day sometimes it can take more like 15 minutes to dry yeah, and you can't put a jumper on over top or shirt on over shirt on over top exactly, and then you know, and then you're like my baby's crying, I need to, I need to pick it, yeah it up, um.
Johanna:And I think that that's also. You know. They've also shown that some women absorb patches much better than gel. So with the patch shortage happening and so many women being shifted onto the two gels that are in Australia, then there's going to be a lot of women that just aren't absorbing in the same way and so they might need to try to take their dose. And I think you know it's interesting because there's been, you know, some muttering in the media recently around. You know, I think you know there's still a bit of a, frankly, a witch hunt against Dr Louise Newsom. I find that women who are pioneers are often well, australia. What do we have? We have the tall poppy syndrome. Tall poppy syndrome Tear them down. Let's just say there's a you know there's a cohort that aren't supportive of the modern type of medicine that Louise Newsom practices, and there's been some mutterings around. You know that this prescribing estrogen outside ranges, you know it's off indication. But what's really interesting is that there is a lot of medications that are prescribed off indication.
Johanna:You ask a doctor and they'd be able to list 20. And you know, the real bugbear when I see this in the media that really drives me bananas is the fact that I'm using mht is off indication. I'm perimenopausal.
Sonya:You look at any pamphlet in any mht and it is for post-menopausal women so every single so that's, that's 100 of us on this call right now are are using MHT off-label.
Johanna:Yeah. So think about like off-label is just, it's impossible to do a randomised clinical trial for every single permutation of every single drug. And, you know, throw in a lack of research. In 20 years, thanks to WHI, you know, we have a dearth of research to the point where there is no research on perimenopausal women and MHT and it is not clinically indicated for use if you are not post-menopause Like that blows my mind. And so then when I see in the media like oh, they're prescribing off-label. This is outrageous. It's like you all prescribe off-label to perimenopausal women. So, yeah, that's, that's one of the things that, you know, kind of drives me a little bit bonkers and did from day one, like literally it was one of my first questions um, when I started working, um, for the pharmaceutical company that makes estrogel, I was like why does your pamphlet say it's for postmenopause?
Johanna:because I'm perimenopause and it's been saving my life for two years yeah and the answer was oh, that's because there's no clinical trial evidence, and to run a clinical trial of the size that we'd need to do to change the indication would cost millions upon millions and millions of dollars.
Sonya:Yeah so they don't and therein lies the problem. You know that we keep coming back to it's twofold it's investment from government or private bodies and it's lack of research. The two are so like a research.
Johanna:Maybe can we put research on the agenda for the next chat, because I have a lot of yes things to say on that topic all right, there you go.
Sonya:There's our hook for our next hot take episode. We are going to deep dive into research, which I think is really good. Actually, it's a really good topic to drive into because there's a lot to unpack and it is such. You know, you did an amazing LinkedIn post about a week ago about research and you know there's a lot to unpack. It's so nuanced.
Johanna:And it appears really complicated from the outside, but it doesn't need to be that complicated.
Sonya:It doesn't need to be, but it's also a really easy throwaway line that we hear over and over and over again. Twofold One is the specialists and cohort that you were alluding to before that are like well, we don't have the research, so therefore we can't do it. And then there's our side of things, which is the community and the consumers for want of a better word going. Well, why isn't there research? Where's the research? Why can't we get the research? You know, the two need to meet in the middle and actually explain why we don't have research. What's being done to overcome that, so that the community understands that research isn't just a tick box, it's not something that you know happens overnight.
Johanna:So, yes, and you've raised it like I'm not going to be able to help myself, sonia, I'm going to have to. I'm going to have to add two cents here and the other bug there. I think that, yeah, you know, um, I can explore more. But academics also have to understand that their pet projects, not necessarily the pet projects that the community wants the answer to, and that is that is the emerging tension in academia and medical research in particular now is that, with the rise of understanding the importance of lived experience and that patient perspective, there is a disconnect often between what the you know, the academic who wants to go down this tiny little niche of their pet project, and actually what the consumer wants to see for their disease or health issue which ties into probably our overarching theme today, which has been advocacy and using your voice, because if we don't tell them what we want, they are just going to keep going down these little narrow rabbit holes that you know suits their needs but doesn't necessarily tick the box for the general population.
Johanna:And I had one other thing I just wanted to raise because you know I've been doing a little bit of work in the background, so we'd mentioned the event at the Opera House so hot right now last year Very excitingly, this week it has sold out. And the reason again I wanted to raise you know what?
Sonya:actually? I'm going to pick you up on that. Not surprisingly, it has sold out Like seriously.
Johanna:somebody sent me a message going oh my God, we've sold out. And I was like well, yeah, duh, yeah. Well, that ties into the advocacy thing, I think as well. The reason I yeah, I wanted to bring it up was that's over 2000 women have bought a ticket in a cost of living crisis to an event at the Opera House which, let's be honest, wasn't super cheap. But getting global superstars from the other side of the world out has a cost, and I think this is something that really is worth exploring from a policy perspective. The fact that you can sell out tickets really fast over 2,000 of them to talk about menopause says women are hungry. Women want more. Women are looking for answers.
Johanna:There is a thirsty crowd. Yeah, there's a thirsty crowd. So I know that the organisers are hoping to get support to maybe do an online option and, you know, potentially seeing if that's something that the government would like to get behind and support.
Sonya:So let's hope so, because I know that's something that you know has been mentioned to me by people that have only just realised they missed out on the opportunity to get tickets because they were like, oh, just wait, buy them in the new year.
Sonya:It's heaps of times, you know it's like March, but also in comments that I've seen online across both the speakers when they've spoken about it, but also here in Australia from different people that have been posting about it. You know, one of the most common comments has been like well, why aren't you coming to Melbourne? You know, why aren't you coming to Brisbane? Like you know, can't you include an event in Brisbane as well, so this, a live stream option would absolutely give so many more of that thirsty crowd the opportunity to not miss out on this incredible event.
Johanna:I know, and I think that's and it is. You know, because I've been doing a little bit of support for them. They would have loved to have brought it to every capital city, but you know the logistics. We've got four superstars. You know. Ponder Wright's a surgeon. They've all got their private practices.
Sonya:Marie Claire Haver is an obstetrician Like getting them all at the same time, kelly Casperson has her own clinic, like you know they do. These are all working doctors.
Johanna:Doctors, yeah, they're all busy women, yeah, absolutely Doing multiple things. So, yeah, the fact that you know they're able to corner them for a day is pretty exciting.
Sonya:But the other parallel that I've kind of been drawing for some people to, both in relation to, you know, the ticket costs and also the fact that they can't visit everywhere. I've been kind of drawing these parallels between, like that, if Taylor Swift was coming to Australia, you know, we've all paid that same amount of money for tickets to events, absolutely, and they don't visit every city in Australia because Australia is a really really big country and it's really expensive to take a show on the road. You know that does involve so many moving parts.
Johanna:So as much as Good point. And as working women, they also deserve, you know, to be remunerated for their time, their time and their travel and so forth. So I yeah, let's keep our fingers crossed that there can be an online version.
Sonya:And also, you know, this is the first event in Australia. This was a bit of a dip the toes in the water. Is there a thirsty crowd? Do they want to actually see these people speak? What value is there in that? Who knows what will come next as a result of this.
Johanna:Yeah, I know it's exciting. This is a, so it's going to be exciting for your new role. It's exciting for advocacy, it's exciting for seeing what happens with the Senate inquiry and PBS.
Sonya:It's a great way to start the year. What a time to be alive. What a time to be a menopausal woman in Australia, Awesome Jo.
Sonya:We need to wrap this up. I hope that everybody listening has found some value in what we've been chatting about today. I hope you've stayed right to the very end, thank you. If you have, I will chuck some links into the show notes pretty much around everything that we've touched on today so that you can go and do your own research as well. Jo, I'm looking forward to chatting to you again in another two weeks.
Johanna:Sounds fun. I'll start my research deep dive.
