What I've Learnt - Dr Amy Wilson

Dr Amy Wilson is a senior OCRF ovarian cancer research foundation researcher and endometriosis patient with lived experience including an ovarian cancer scare. Amy brings personal and professional insight to the OCRF mission: to detect ovarian cancer earlier, improve treatment outcomes, and prevent the disease altogether . Having just had her first child she is hopeful and dedicated to closing the gender health gap and to improving healthcare for women in every stage of life.

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Transcript

SPEAKER_00 0:08

Well, Dr. Amy Wilson is a senior OCRF researcher and endometriosis patient with lived experience, including an ovarian cancer scare. Currently eight months pregnant, she brings personal and professional insight to the OCRF mission to detect ovarian cancer earlier, improve treatment outcomes, and prevent the disease altogether. So, Amy, welcome to the What I've Learnt podcast. Thank you so much for having me. Very excited to be here. Well, I'm very excited to have you because I actually recently just interviewed you on a panel which was a great fundraiser for the Ovarian Cancer Research Foundation, in which we talked so many of the issues affecting women and the health journey. And you were wonderful, and I think you gave a really good insight into the importance of research. Oh, thank you. Yeah, it was great. So, do you want to tell us a little bit about your story and how you got into research, I suppose, is really the starting point for you.

SPEAKER_01 1:15

Yeah, sure. So I did an undergraduate science degree because I absolutely love science. I'm a massive nerd. And I did it just out of interest. I didn't really know what I wanted to do with my life, but I loved science. So I decided to, you know, give it a crack. And I think that's really important. Just do what you love. And when I got to the end of my degree, I thought I might try research. So I was looking for a research project, and I really didn't know a lot about ovarian cancer. But I ended up getting an interview with an ovarian cancer lab. And it just absolutely shocked me how poor the statistics are, how far behind the research is, and how much needed to be done. And I really wanted to do something about that. So yeah, I find it pretty shocking that we didn't learn a lot about, I don't know, even the ovaries.

SPEAKER_00 2:16

Yeah, especially cancer. Exactly. And in fact, that's a good point because actually we don't learn much until something either happens to someone we know or love or care about. And I think we need STEM. We need women in STEM, and really it's so important that there's an understanding of how important these issues are. And therefore, often it's women like yourself who come into the research space that can help navigate that, but also drive change. So talk to me about why closing the gender health gap is so urgent right now. I mean, it's always been very important, but why is it even more important at the moment? It's become, it's really become the zeitgeist. Everyone's talking about how massive it is and why it needs to change.

SPEAKER_01 3:05

Yeah, I mean, we've seen some really incredible research breakthroughs in a lot of diseases, and it's absolutely amazing. But unfortunately, for decades, the way that our system has been designed is more so targeted to men. And I think that's evident in a couple of different ways. Researchers didn't even have to include women in clinical trials until 1993, which is absolutely shocking. So it's just been decades and decades of inequities. You can see that that really widens the gap. And that's why it's so important to address the gap, the gender gap now, because if we don't, then we're going to see a further divide, especially with you know, new really exciting technologies. And we're now in the AI era, right? It's got some incredible benefits in the world of medical research, but we have to make sure that women are not left behind.

SPEAKER_00 4:13

Can you elaborate a little bit on how you see that playing out? The benefits. I mean, I've interviewed a number of uh specialists who talk about the, like, for example, breast screening, having AI resources for breast screening can be extraordinary in terms of the outcomes. You can get much quicker assessment and analysis of risky breast screens, et cetera, et cetera. And it closes the time from when a woman can be diagnosed because you actually quickly use AI from what they're advising. There's some extraordinary transformations in that space. Is that the sort of thing you're referring to? Or and then at the research level, how is AI playing out?

SPEAKER_01 4:52

Yeah, absolutely. I will preface this by saying I am in no way an AI expert, but as you said, you know, using that example of breast screening, AI has this ability to recognize patterns that perhaps humans can't recognize, or it would take a lot of time and effort to recognize in a way that it's not feasible at all. So, you know, you can kind of expand this to other diseases where you can look at these really complex data, I guess, platforms and collections of data. We, as scientists, collect so much now. You've got your genome sequencing, you can look at DNA, you can look at the patterns on DNA, you can look at different proteins. We need a way to construct this into something that's actually usable. Otherwise, you've just got this, you know, you're stamp collecting data, really. So, yeah, I think in this way, AI is is really exciting in the research field, but it's so important that it's used in an equitable way. So if we're training AI on, you know, data that comes primarily from men or or primarily from, for example, white people, then you're you're leaving a whole proportion of individuals behind. So it's, you know, it's exciting, but it is really important that we're able to do it in an equitable way.

SPEAKER_00 6:26

And are you seeing that on the ground in where you're working at the OCRF? Are you seeing the use of research being unified with AI? Are you seeing this sort of hybrid approach?

SPEAKER_01 6:39

Yeah, definitely. So the Ovarian Cancer Research Foundation have collaborated with a few of our global uh funding partners, and we've actually funded our first AI accelerator grant. And what that is, is kind of like I described, harnessing AI, taking those insights from patients to say, okay, these treatments either working well or they're not working well, using that information to better predict how a patient will respond to a treatment, which treatments they'll respond best to, and also inform development of new therapies as well. So, yeah, that's kind of how it's being used in the ovarian cancer space at the moment. And we at the OCRF wanted to take that opportunity as well to say, you know, there's there's incredible projects in this space for other cancers, like you said, breast cancer. Ovarine cancer can't be left behind. We, you know, we need to do our best for these patients because ovarian cancer does have such poor survival outcomes.

SPEAKER_00 7:45

And actually, if you could just give our listeners a little an insight into some of the stats around that, because which you mentioned when I spoke to you at the panel, I mean, it's it's really probably the what one of the most challenging and the most underfunded, although, thanks to the Witchery White Shirt campaign and to what the OCRF are doing, obviously there's great fundraising and support. Tell us a little bit about just the stats and how this is an area that needs a lot more input.

SPEAKER_01 8:14

Yeah, sure. So you, you know, we've spoken about breast screening and there's other screening programs like cervical cancer, which, you know, and bowel cancer, which are amazing. But unfortunately, there's no early detection test for ovarian cancer. As a result, most cases are diagnosed when the disease has spread to other organs. It's got a 49% five-year survival rate. So less than half of those diagnosed with ovarian cancer will be alive in five years' time. Those statistics get worse as the stage progresses or with the later state. Recurrence is common when the cancer comes back. When the cancer comes back, it's much more resistant to treatments. And the treatments that are used for ovarian cancer, you know, it's chemotherapy that was used in the 70s. So there have been a couple of advances in new treatments that are just, you know, coming out now for ovarian cancer. And this has been the result of research funding, as we know. But, you know, you mentioned the OCRF and the white shirt campaign. It's not enough. So yeah, we really, we really need more to get those those survival rates up. You know, I said the survival rate was sorry, it was 49%. That was the survival rate for all cancers in 1975. So ovarian cancer is currently sitting in 1975.

SPEAKER_00 9:56

That is really quite mind-blowing, isn't it? It and it shows how critical this issue is. I mean, you've lived the experience of an ovarian cancer scare that you've touched on. How has that shaped the way that you approach research? While it turned out that it was okay, it was pretty scary for you. How has that informed your research journey, I suppose?

SPEAKER_01 10:19

Yeah, sure. Just for a little bit of background. So a couple of years ago, I was in the emergency room with excruciating pain. They ended up doing an ultrasound and finding a cyst on my ovary. And they sent me home with antibiotics and said it's probably an STI. And through months of, you know, trying to navigate the healthcare system as someone who is trained in science. I can't even imagine what it's like for an individual that doesn't have that scientific background. I ended up being referred to a gyneoncologist just in case it was ovarian cancer. I had surgery, and luckily it wasn't ovarian cancer. It ended up being a cyst caused by endometriosis. But yeah, as you said, that was a pretty terrifying time for me. And it really has informed the way that I think about research. Research needs to be patient-centered. If you're, you know, doing science and doing research, you have to listen to the voices that are at the center of that research. And I still see a lot of scientists don't do that enough. And I get that science is really cool and people want to do it, but you know, it's it's just so important to listen to the issues that are at the heart of what you're trying to address.

SPEAKER_00 11:55

And I think to your point, I mean, it's a at the end of the day, the science is important, but it's based, it has a human foundation, and that's where it's got to be centered because that's really what it's for. You know, there is some, there is a quite a lot of movement in the early detection test zone. People, there is a lot of progress, from what I understand. It's not that far off that there might be an early detection test. In fact, I think they've got, I did interview one of the researchers to indicate that it is heading in the right direction. So what's stopping that progress? Is it funding? Is it why is it, you know, how and how far do you think we are away from having that test out in the world for the everyday woman?

SPEAKER_01 12:35

Yeah, so research takes time, I would say unfortunately, but I mean there's a good reason that it takes time. It's really complex and it's hard to do. So, you know, as you mentioned, the OCRF have been funding research since 2017, and that research, which is focused on a blood-based test for ovarian cancer, it's based at the University of Queensland, and that just entered an early stage clinical trial. That clinical trial is a feasibility trial. So, what that means is it's looking at how the test works in real-world settings, whether they can collect the blood, process it, send it off, make sure that it's still picking up those markers that it's meant to be picking up. And this is a three-year clinical trial. And it just started in February this year. So once that's finished, it will go into a larger clinical trial that will take several other years. So, yes, it's a long process, but there is progress in that area, and it's very exciting. And I can't give a an exact deadline, but yes, but it's you know, we've seen, we've seen some really great progress in this area.

SPEAKER_00 13:56

And tell me a little bit about, I mean, obviously, you mentioned endometriosis, and endometriosis and ovarian cancer are often spoken about separately, but is there a link? And can you explain that relationship and why it matters for research? Like there is, and obviously they've opened endometriosis clinics, only a few, but better than nothing. Do you do you see that there is that link? And if so, what is that link?

SPEAKER_01 14:24

Yeah, so there was a big study that came out, I think it was last year, that showed a relationship between endometriosis and some subtypes of ovarian cancer. So if someone has endometriosis, they are at a higher risk of developing some of the rarer types of ovarian cancer, called endometrioid ovarian cancer and clear cell ovarian cancer. These are subtypes that are more likely to occur in younger individuals. So we don't actually know why yet, but we think there is overlapping biological mechanisms between what's happening in the endometriosis tissue and how these certain types of ovarian cancers develop. So even though it's still relatively rare, ovarian cancer is still relatively rare, especially these kind of rarer subtypes, it's important to be aware of and to discuss with the clinician. Because, you know, if you're informed and and you kind of know these things, then I think you're going to be at ease more so than if you're not aware of these things.

SPEAKER_00 15:39

I think the other thing that we touched on and that I think is important is delay and diagnosis and just as it in the general framework of the gender health gap and the essential struggle for many women going through the system to get the right diagnosis, whatever that might be, and to get the support. And that often that's a real issue because it's a silent kill over bearing cancer that people don't often realize the symptoms, there could be a whole range of things. But that then relies on the infrastructure of the medical system to navigate that. And as you mentioned, it was quite challenging with your what you went through. What would you change? And how do you see that we can improve the medical system to facilitate support, but also quicker diagnosis, which obviously is going to lead to better treatment?

SPEAKER_01 16:27

Yeah, sure. As you said, ovarian cancer, you know, the symptoms of ovarian cancer are quite nonspecific to the disease, and a lot of them mimic, you know, menopause, menstruation, gastrointestinal symptoms. So the average diagnosis for ovarian cancer in Australia is 31 weeks, but one in 10 cases it takes a year to be diagnosed, which is absolutely shocking. And then if you look at endometriosis, the diagnostic, average diagnostic timeline is six to eight years. It's it's so shocking. And I think this this really comes down to a range of things. As you said, it's a it's a systemic issue. But if you start from the start and you look at how medical professionals are trained, I really don't think there is enough training in women's health diseases, especially. So you've got GP training, and then you've also got people's awareness of symptoms, and you know, there's this stigma that where people say, oh, oh, this is normal, you know, this is a symptom of my period, or it's a symptom of menopause. I don't have to worry about it. So they don't go to the doctor and they don't follow up these issues. And if if the GP says, oh, you know, it's probably nothing, or I'll refer you to a gastroenterologist, for example, they don't push. So it, I mean, it it's not the individual's fault. I mean, it's a whole system's fault. But I think it there's multiple levels to it, and you have to address those at every single level as well, at the policy level as well, at the infrastructure level, because if GPs, medical professionals, if people in the government are not actually taking any kind of accountability, then they're less likely to do it. So it just comes down to absolutely everything.

SPEAKER_00 18:33

Yeah, I agree with you. And actually, from a as a patient and as a from a patient perspective, advocacy and agency, which is very much what, as you know, OVM, which is the platform which highlights the capacity for one to take one's health into their own hands. So the whole notion of OVAM is that you have it on your phone, you have all of your symptoms you can track, cycles, etc., etc. This gives women agency and gives them the capacity to go into their doctor and say, Well, I've got these symptoms I've been tracking for the last week or two weeks. These, this is what I've experienced, and to push and to advocate for one's health. Because at the end of the day, the systems, the bureaucracy make it very difficult to break through. But keeping a record of your own health allows you and facilitates you to feel empowered in that context.

SPEAKER_01 19:27

Absolutely. I totally agree. And I think that's also something that a lot of people struggle with identifying the symptoms, being able to describe those symptoms and those pain levels. So having an actual platform that does that for you, I think is incredibly important.

SPEAKER_00 19:47

And I think the other thing is that we just have to have agency because often it's almost like a grassroots where women have to actually be, as we as often is the case, the drivers of their own journey and to not always trust the system implicitly. I mean, it's so interesting to me. I mean, you're eight months pregnant and having had children myself, I actually found the health system reasonably good for most of my experience. But a lot of it is being aware, being educated, being informed, and knowing that you have the agency to make decisions.

SPEAKER_01 20:22

Yes. I actually have something to say about this. So, as you said, I'm eight months pregnant and I am now in the maternity health system. And it's just been, I feel like every time I've had something, they're on it straight away. They'll test for everything, they'll check for everything. And I find this really interesting. So I went to, I had to go to the emergency a couple of weeks ago because I was having weird pain that I didn't know what it was. It was totally okay, but I went just in case. And I was seen within minutes. And as I was going through the system, I just thought to myself, if this was an endometriosis flare-up, I would not be getting this attention. I have spent hours and hours in emergency rooms before, you know, not getting any attention. And I think it's it's really interesting when it comes to maternal health. There's so much, you know, there's so much care and support. Whereas if you compare that to chronic illnesses where people either are not believed or their diagnosis is delayed, or you know, then they're not taken seriously. It's quite, there's quite a a stark contrast.

SPEAKER_00 21:39

Yeah, I mean, how how sort of ironic, strange that that's the case. I mean, clearly this goes to education and to people. It's interesting too, like obviously, recently, just a week or two ago, they changed the name of PCOS. It's now PMOS, metabolic ovarian syndrome. I think it's it's really reflective. Do you think that because we talk about education and about perspective and the lens? So clearly, with a maternal overtly pregnant going to have a baby, there seems to be a very clear roadmap that people have been doing forever. And there's, as you mentioned. But when it comes to some of these syndromes, which are now obviously being reframed, renamed, however you want to call it, do you think that that is a reflection that that as we evolve and as we put the gender priority and the women's health gap up high, people are starting to actually go, wait, we need to reframe that. And in doing so, maybe that will allow for better responses to filter down. Do you think that's yes?

SPEAKER_01 22:47

I am incredibly happy that it's been renamed to PMOS because it it much better reflects what the disease actually is. And I would also like to compare that to endometriosis. So we call it endometriosis because the original theories are based around what's called retrograde menstruation, where the endometrial cells from the uterus were thought to come out of the fallopian tubes into the peritoneal cavity, and those endometrial cells or tissue were causing those endometriosis lesions. We now know that it's a lot more complicated than that, and they're not actually endometrial tissue from the uterus, they're just similar to it. And we also know that endometriosis is a systemic chronic inflammation issue, not just inflammation, but it's got neural involvement as well. It's so much more complicated than what the name suggests. And I think for this reason, you know, it's often not taken so seriously. You'll hear, you'll hear people say, oh, you know, it's just a bad period. It's absolutely not. It's a whole body disease. So, yeah, to come back to your question, I think it's so important to reframe these diseases to make sure that they accurately reflect what they actually are. And that comes down to firstly research, actually discovering what is happening in the body. And it really comes down to that tireless advocacy to say, no, we we now know this isn't what the disease is. We need, you know, a name or a system or a policy or framework to recognize that.

SPEAKER_00 24:42

Exactly. That's right. And actually, you know, Bindy Irwin obviously has been very suffering quite a lot and been posting and and recording her extraordinary story and challenge experiencing endometriosis. So that's giving it a very high profile, as are many others have come out of the woodwork. In fact, I'm amazed how many women are actually talking about this disease, which is all part of the story, isn't it? Because as we talk about it, we get a sense of what is happening, and people are therefore educated. And then that moves us to obviously putting it on the platform, hopefully getting extra funding. So the recent budget, the women's health allocation, which was there was some in there that was quite helpful. What was what's your take on? There's a lot more to do, I suppose, is what I would say. But what's your perspective on the recent budget and the funding for women's health? What do you think in terms of its outcome and where it should go from here?

SPEAKER_01 25:43

Yeah, I think you said it. It there's much more to do. I mean, it's great that they're starting to recognize, you know, women's health. That's that's great, but there's I think there's so much more that they could do. I think gynecological cancers as well is a a really great example as to something they they could have addressed in the budget. It's something that, you know, is so behind and really needs attention and really needs some kind of framework and funding to address these issues. And you spoke about the pelvic pain clinics, which are a great start, but you know, there's not enough, and the timelines to actually get into these clinics is quite long. And I also think in my experience, managing endometriosis is a holistic approach. So I started seeing a pelvic pain physiotherapist, you know, some people see a nutritionist to address their endometriosis. I think there's a lot of things that I I guess we can be doing to better manage endometriosis, but I'm coming from an incredibly privileged position where I can afford these gap payments, but a lot of people can't. So I think uh, you know, just governments also need to address that. The affordability, yeah. The affordability of managing not just endometriosis, but all kind of chronic health issues as well.

SPEAKER_00 27:28

And I think also ensuring that I've seen there's quite a few women going to parliament this week to talk about perimenopause and menopause. There's, I mean, there's so much to discuss. And a woman's journey, you know, a woman's journey, I mean, I have daughters and I know my own journey, and you're about to have a baby, and you've been on your journey with endometriosis, and now you're about to have a baby. And the reality is you cannot compare to, let's say, my son's journey, which is completely different, and that's got its own men have their own issues that have to be addressed separately. But, you know, he's it's just so interesting to me from the minute that a woman starts menstruating. Really, it's just a constant watch and wait and see and make sure these things are cross-checked. And they're almost, I mean, that's partly where Ovum I find quite effective because you have a platform where you can actually record your cycles and all the things that are happening to you. And we need to make sure that we are aware our journey is so fundamentally different. The funding needs to be different, the support needs to be different, and the research needs to be different and and accelerated dramatically, as you've highlighted, because we are way behind.

SPEAKER_01 28:39

Yeah, absolutely. Well, what's the quote? Women are not small men.

SPEAKER_00 28:44

I love that quote. That's brilliant. Yeah. I mean, you know, it's like the crash dummies, you know, they they all the cars have been built, as you would know, based on male crash dummies. It's just when I heard that, I was like, I interviewed this woman, she said, yeah, all of the cars, so all of the safety elements are built around a male if you have a crash in a car. Yeah. I mean, that sort of sums it up, doesn't it, really?

SPEAKER_01 29:07

Yeah. And it's the same with another example, a really good example is heart disease and heart attacks. So even though men are more likely to have a heart attack, women are twice as likely to die from a heart attack because they experience heart attacks differently. Their symptoms are different, their management is different. As a result, you know, they aren't seen as quickly as men. So interesting. Yeah.

SPEAKER_00 29:35

Is that because they just tolerate the symptoms? They basically just go, no, no, I'll be fine. You know, like, no, but that's that is really important for women to know that because particularly the next, you know, as women get older, or there's just so many factors. But you have been so wonderful. Thank you so much for joining us. Your baby is due very soon. You look glowy and gorgeous and articulate as always. And I just want to thank you for taking the time to share your insights because the more people that know and understand the value of research and funding and the women's health and closing the gender health gap, the better.

SPEAKER_01 30:18

Yeah. Yeah. Yeah. Well, thank you so much for having me. It's been a pleasure speaking to you again. Um, and I will say, if if you do want to learn more about ovarian cancer, go to ocrf.com.au. There's some awesome resources on there, symptoms, research, everything. So yeah.

SPEAKER_00 30:35

Thanks so much, Amy. Good luck with the baby. Can't wait to hear what you have. Thank you so much. Well, thank you for joining us on the What I've Learned podcast. I hope you enjoyed that interview because we are so privileged to have a wonderful platform where guests come on and share lessons learned, rivers crossed, mountains climbed. We love our shared humanity, and we are so grateful to have such a beautiful community. So remember to stay curious, kind, and connected, and we'll see you next time at the Waterflood Podcast.