WEBVTT - How Australia is tackling endometriosis 0:00:00.560 --> 0:00:04.520 Already and this is the Daily This is the Daily OS. 0:00:05.200 --> 0:00:06.880 Oh, now it makes sense. 0:00:14.920 --> 0:00:17.480 Good morning and welcome to the Daily OS. It's Friday, 0:00:17.560 --> 0:00:18.599 the twenty third of May. 0:00:18.760 --> 0:00:21.040 I'm Lucy Tassel, I'm Zara Seidler. 0:00:21.800 --> 0:00:25.160 Endometriosis has been in the headlines this week, with the 0:00:25.200 --> 0:00:28.760 announcement of a new specialized clinic and a data drop 0:00:28.840 --> 0:00:34.440 from Australia's Health Institute. That's because the sixteenth World Congress 0:00:34.479 --> 0:00:39.000 on Endometriosis began this week. That's actually being held in Sydney, 0:00:39.040 --> 0:00:42.920 and so global experts are discussing the condition and how 0:00:43.000 --> 0:00:46.599 best to treat it. The chronic pelvic condition affects at 0:00:46.680 --> 0:00:51.040 least a million Aussies and diagnosis rates are increasing. In 0:00:51.080 --> 0:00:55.720 today's episode, we'll explain the latest developments in endometriosis research. 0:00:55.400 --> 0:00:57.640 And what they might mean for people with the condition. 0:01:01.280 --> 0:01:06.240 Lucy, we've seen two really big stories around endometriosis and 0:01:06.280 --> 0:01:11.319 the data around endometriosis specifically this week, and judging by 0:01:11.360 --> 0:01:14.120 our audience response, it's some of the most engaged pieces 0:01:14.120 --> 0:01:17.400 we've had in weeks. People really care about it and 0:01:17.680 --> 0:01:19.840 they want to know more about what's being done to 0:01:19.959 --> 0:01:22.520 treat it and what the research is showing us. 0:01:22.600 --> 0:01:26.240 Yeah, exactly, And I think the number of people who 0:01:26.319 --> 0:01:30.520 have endometriosis and the kind of intense impact you can 0:01:30.600 --> 0:01:33.800 have on your life kind of shows why people would 0:01:33.800 --> 0:01:37.160 be invested in that. If you have close contact with 0:01:37.200 --> 0:01:40.160 someone with ENDO, or if you have endometriosis yourself, you 0:01:40.240 --> 0:01:42.959 know how much of a life changer it can be. 0:01:43.440 --> 0:01:43.679 Yeah. 0:01:43.720 --> 0:01:46.480 Absolutely, And so I guess for anyone listening who isn't 0:01:46.480 --> 0:01:51.040 familiar or who hasn't experienced it themselves, what is endometriosis 0:01:51.200 --> 0:01:54.120 and what can the symptoms feel like and look like? 0:01:54.320 --> 0:01:54.680 Yeah. 0:01:54.800 --> 0:01:58.800 Endometriosis is a condition where tissue similar to the lining 0:01:58.840 --> 0:02:02.040 of the uterus grows elsewhere in the body. It can 0:02:02.120 --> 0:02:08.480 cause debilitating pain in the pelvic region, digestive problems, excessive bleeding. 0:02:08.720 --> 0:02:12.000 It can be associated with infertility, and that pain and 0:02:12.000 --> 0:02:15.720 bleeding can be before, during, and after your period. It's 0:02:15.760 --> 0:02:20.440 primarily diagnosed through surgical intervention. In the last couple of years, 0:02:20.480 --> 0:02:23.400 we've had a couple of very prominent Australian women speak 0:02:23.480 --> 0:02:25.959 up about their experiences with endometriosis. 0:02:26.000 --> 0:02:28.160 I'd say most recently Bindi Irwin. 0:02:28.080 --> 0:02:31.120 Yes so, Bindi Iwen and former Australian of the Year 0:02:31.160 --> 0:02:34.880 Grace Tame have both described having to have surgery to 0:02:35.040 --> 0:02:39.720 ease their pain, which Bindi said was insurmountable and Grace 0:02:39.760 --> 0:02:43.919 Tame said was chronic. New research from the University of 0:02:43.960 --> 0:02:45.560 Queensland from a couple. 0:02:45.280 --> 0:02:45.839 Of weeks ago. 0:02:45.919 --> 0:02:48.480 Even before this last week of headlines, there was new 0:02:48.480 --> 0:02:51.440 research published a couple of weeks ago which found women 0:02:51.560 --> 0:02:55.840 with endometriosis were seven times more likely to enter menopause 0:02:55.919 --> 0:02:58.440 early than those without. And again, just to put it 0:02:58.440 --> 0:03:02.200 into perspective, according to the Australian Institute of Health and 0:03:02.240 --> 0:03:05.240 Welfare we'll come back to them later, around one in 0:03:05.360 --> 0:03:08.880 seven women and girls in Australia have endometriosis. 0:03:09.120 --> 0:03:11.840 And there are so many complexities here because there's obviously, 0:03:12.080 --> 0:03:14.640 as you said, the pain and the chronic pain that 0:03:14.760 --> 0:03:17.679 one can experience. But you also spoke about the fact 0:03:17.720 --> 0:03:20.400 that it's so hard to diagnose that people have to 0:03:20.840 --> 0:03:25.320 have surgical intervention to even know for sure that endometriosis 0:03:25.480 --> 0:03:27.920 is what is going on and causing the pain that 0:03:27.960 --> 0:03:31.320 for so many women can just be unexplained. Otherwise, what 0:03:31.560 --> 0:03:35.680 can be done to treat endometriosis once it's been diagnosed. 0:03:35.200 --> 0:03:39.080 So there's no cure per se, and as we've mentioned, 0:03:39.120 --> 0:03:41.560 you might have to go in for surgery over time, 0:03:41.920 --> 0:03:46.160 possibly several surgeries to remove tissue. There are medications you 0:03:46.200 --> 0:03:49.640 can take that will limit the growth. There's one called Visan, 0:03:50.040 --> 0:03:53.800 which the government added to the Pharmaceutical Benefit Scheme last year, 0:03:54.160 --> 0:03:56.680 so that means a twenty eight day prescription will cost 0:03:56.840 --> 0:04:00.480 you no more than thirty one dollars sixty And hormonal 0:04:00.480 --> 0:04:03.360 birth control can for some people ease some of the 0:04:03.400 --> 0:04:06.960 symptoms as well, but there's not like a vaccine or 0:04:07.000 --> 0:04:08.960 a magic pill that makes it go away. 0:04:09.040 --> 0:04:10.520 It can only be kind of mitigated. 0:04:10.800 --> 0:04:13.120 Yeah, And one of the things that people talk about 0:04:13.200 --> 0:04:15.880 is the fact that it is so under researched and 0:04:16.080 --> 0:04:20.119 that there is so much that is not known about endometriosis, 0:04:20.160 --> 0:04:22.080 which I think leads quite nicely into what the first 0:04:22.120 --> 0:04:26.600 announcement this week was, which was about a new research institute. Yes, 0:04:26.640 --> 0:04:27.599 can you talk me through that. 0:04:27.880 --> 0:04:28.120 Yes. 0:04:28.200 --> 0:04:30.919 So we learned earlier this week that the University of 0:04:30.960 --> 0:04:34.360 New South Wales you and sw in Sydney, is going 0:04:34.360 --> 0:04:39.800 to establish a world first endometriosis research institute. This institute 0:04:39.839 --> 0:04:43.080 is going to focus on fast tracking and new understanding 0:04:43.240 --> 0:04:47.039 of the condition and improving health outcomes to women who 0:04:47.040 --> 0:04:52.239 have endometriosis. You and sw researcher Professor Jason Abbott said 0:04:52.440 --> 0:04:56.760 the institute's quote, program driven scientific discoveries will pave the 0:04:56.760 --> 0:04:59.960 way for generational change for anyone who has or no 0:05:00.320 --> 0:05:05.279 someone with endometriosis. So that's a pretty big call. Professor 0:05:05.279 --> 0:05:09.240 Abbott said he'd cared for people with endometriosis for thirty years, 0:05:09.560 --> 0:05:12.360 and he said that experience had shown him, quote we 0:05:12.440 --> 0:05:15.800 must go beyond the surgery and current medical treatments to 0:05:16.000 --> 0:05:18.440 understand the disease processes. 0:05:19.040 --> 0:05:20.960 We'll be back with the rest of today's deep dive 0:05:21.120 --> 0:05:29.200 after a short message from our sponsor and Lucy Research. 0:05:29.240 --> 0:05:32.600 Institutes are not traditionally cheap to set up. They are 0:05:32.720 --> 0:05:37.880 expensive and the donation that has set up this foundation 0:05:38.240 --> 0:05:39.200 has been huge. 0:05:39.320 --> 0:05:41.600 Yes, it's fifty million dollars, which is a big chunk 0:05:41.600 --> 0:05:44.520 of change. It's being dispersed over ten years, and it's 0:05:44.560 --> 0:05:48.320 actually come from the Ainsworth family, who own one of 0:05:48.360 --> 0:05:53.159 the world's largest gambling machine companies. This donation is believed 0:05:53.160 --> 0:05:57.320 to be the world's biggest by a family to endometriosis 0:05:57.360 --> 0:06:00.560 research and to women's Health in Australia. 0:06:00.760 --> 0:06:03.360 Yeah, I've seen a lot of discourse online about that donation, 0:06:03.520 --> 0:06:07.159 which you can read about. But really really interesting there. 0:06:07.640 --> 0:06:10.560 So you said that was the first announcement, but then 0:06:10.880 --> 0:06:13.800 later in the week it was really interesting timing. We 0:06:13.880 --> 0:06:17.920 got all of this new data about endometriosis that now 0:06:17.960 --> 0:06:20.440 tells us a fuller picture of what the state of 0:06:20.839 --> 0:06:22.839 endometriosis in this country actually looks like. 0:06:22.960 --> 0:06:26.480 Yes, the second headline we saw around endometriosis this week 0:06:26.640 --> 0:06:29.680 was a big data drop from the Australian Institute of 0:06:29.680 --> 0:06:33.479 Health and Welfare, who I mentioned earlier. The AIHW. It 0:06:33.560 --> 0:06:38.280 collected data about how many women were hospitalized for endometriosis 0:06:38.440 --> 0:06:43.000 and how many presented to the emergency room. The AIHW 0:06:43.160 --> 0:06:45.279 found that in the twenty twenty two to twenty three 0:06:45.400 --> 0:06:49.960 financial year, more than forty four thousand visits to hospital 0:06:50.120 --> 0:06:55.160 were related to endometriosis. That's up from around thirty thousand 0:06:55.360 --> 0:06:58.440 in twenty twelve twenty thirteen, so a big, big jump 0:06:58.520 --> 0:07:01.800 over the course of a decade. The most compelling stat 0:07:01.839 --> 0:07:04.359 for me looking over this starter and for our journalist 0:07:04.400 --> 0:07:06.880 at tool a Rock, was that young women were the 0:07:06.880 --> 0:07:11.160 most affected. Hospitalization rates. Among women age twenty to twenty 0:07:11.160 --> 0:07:13.760 four actually doubled in that ten year period. 0:07:14.040 --> 0:07:17.040 I find that really interesting because when we wrote about 0:07:17.120 --> 0:07:20.000 the research Institute, I was looking through the media release 0:07:20.040 --> 0:07:22.040 that was sent to us about that, and there was 0:07:22.080 --> 0:07:24.559 a line specifically in that media release that spoke about 0:07:24.600 --> 0:07:29.000 older women and their experience with endometriosis and how prevalent 0:07:29.160 --> 0:07:33.040 it is for a certain age group. But now are saying, wow, 0:07:33.160 --> 0:07:36.320 we are looking at double in a young cohort. 0:07:36.640 --> 0:07:39.000 I wonder if, and this is just pure speculation, I 0:07:39.080 --> 0:07:44.040 wonder if it's young women who have now learned about endometriosis, 0:07:44.160 --> 0:07:46.920 or you know, through kind of public awareness, have come 0:07:46.960 --> 0:07:49.480 to understand it, being able to say no, I need 0:07:49.520 --> 0:07:50.400 to go to the hospital. 0:07:50.440 --> 0:07:51.200 I know what this is. 0:07:51.400 --> 0:07:55.640 Yeah, pure speculation, but certainly the AIHW has said that 0:07:55.760 --> 0:07:57.680 people are more aware of the condition than they were 0:07:57.720 --> 0:07:58.280 ten years ago. 0:07:58.480 --> 0:07:59.200 That makes sense. 0:07:59.400 --> 0:08:02.119 Additional, we learned that in the twenty twenty three twenty 0:08:02.120 --> 0:08:07.080 four financial year they were close to five thousand endometriosis 0:08:07.120 --> 0:08:09.440 related presentations. 0:08:08.680 --> 0:08:12.120 To the emergency department, and around three. 0:08:12.000 --> 0:08:14.920 Quarters of those were assessed as needing to be seen 0:08:15.000 --> 0:08:16.720 by a doctor within half an hour. 0:08:16.840 --> 0:08:18.720 Shows you how acute the pain is. 0:08:18.840 --> 0:08:19.720 Yeah, exactly. 0:08:20.320 --> 0:08:24.320 Overall, across all women, the number of hospital admissions over 0:08:24.320 --> 0:08:28.720 that period related to endometriosis has increased by fifty four percent, 0:08:28.840 --> 0:08:30.200 so again another big jump. 0:08:30.320 --> 0:08:33.199 Yeah, so across the board. Clearly there is a huge 0:08:33.240 --> 0:08:36.240 increase there. You kind of spoke to this a bit earlier, 0:08:36.240 --> 0:08:38.520 but we'd love to know more about was there any 0:08:38.559 --> 0:08:43.440 information beyond knowledge of the issue that perhaps contributed to 0:08:43.559 --> 0:08:44.680 these increased rates. 0:08:44.880 --> 0:08:45.160 Yeah. 0:08:45.240 --> 0:08:50.600 The AIHWU did note that diagnosis rates are going up overall, 0:08:50.720 --> 0:08:54.960 so again just kind of speaking to that greater understanding. However, 0:08:55.400 --> 0:09:00.600 it did say endometriosis is historically underrecognized and that there's 0:09:00.640 --> 0:09:04.280 still an average of between six and eight years between 0:09:04.320 --> 0:09:07.600 onset of symptoms and diagnosis, which I think you would 0:09:07.600 --> 0:09:10.680 agree is a long time to live with unexplained chronic pain. 0:09:10.920 --> 0:09:14.240 Yeah. Absolutely, And Lucy, earlier you mentioned that the government 0:09:14.320 --> 0:09:17.000 had subsidized a medication for ENDO. 0:09:17.320 --> 0:09:17.600 Yeah. 0:09:17.600 --> 0:09:20.520 I'm curious to know if they are doing anything else 0:09:20.640 --> 0:09:23.640 in this space, given the rapid increase that we are 0:09:23.679 --> 0:09:26.920 seeing and hearing about when it comes to diagnoses and 0:09:27.120 --> 0:09:28.520 presentations to hospitals. 0:09:28.640 --> 0:09:30.320 Yeah, I mean it makes sense that we would be 0:09:30.400 --> 0:09:32.440 wondering about what the government would be doing to something 0:09:32.520 --> 0:09:36.199 that affects one in seven Australian women and girls. So 0:09:36.440 --> 0:09:42.040 two successive governments have taken steps towards investigating and treating endometriosis. 0:09:42.400 --> 0:09:46.360 The previous coalition government actually in twenty eighteen created a 0:09:46.400 --> 0:09:50.520 Federal Action Plan. It was aimed at improving diagnosis rates, 0:09:50.880 --> 0:09:54.920 treatment and support for those living with endometriosis and pelvic 0:09:54.960 --> 0:09:58.880 pain in twenty twenty four, so last year, the Labor 0:09:58.920 --> 0:10:01.960 government that was elected in twenty twenty two provided an 0:10:02.040 --> 0:10:03.839 update on this plan. Because it was the sort of 0:10:03.880 --> 0:10:06.839 thing that carries over regardless of who's in government. It 0:10:06.920 --> 0:10:10.679 said it had allocated budget funding for early intervention to 0:10:10.760 --> 0:10:14.679 support patients and to improve access to medical scans like 0:10:14.880 --> 0:10:17.760 MRIs to help people understand what's going on. 0:10:17.880 --> 0:10:18.120 Yeah. 0:10:18.120 --> 0:10:21.880 The government has also appointed an advisory group to guide 0:10:21.920 --> 0:10:25.560 where funding should go and where research should focus. And 0:10:26.080 --> 0:10:31.280 as a practical measure, it's opened twenty two pelvic paying 0:10:31.320 --> 0:10:32.600 clinics around the country. 0:10:32.760 --> 0:10:34.199 Oh yeah, I remember that announcement. 0:10:34.520 --> 0:10:37.840 Yes. At the last budget in March which I was 0:10:37.920 --> 0:10:41.600 there to look over the document, the government set aside 0:10:41.600 --> 0:10:46.040 funding for eleven more and Finance Minister Katie Gallaher told us. 0:10:45.960 --> 0:10:48.360 At the time that it's something that the government takes seriously. 0:10:48.480 --> 0:10:51.760 Yeah, really interesting, Lucy, thank you for explaining that. As 0:10:51.800 --> 0:10:55.559 you've said, it clearly affects so many people across the country. 0:10:56.120 --> 0:10:58.720 If you yourself don't experience it, the chances are that 0:10:58.760 --> 0:11:00.440 you do know a woman in your life who is 0:11:00.520 --> 0:11:04.360 experiencing that sort of pain. So really useful for us 0:11:04.360 --> 0:11:06.559 to understand the state of play and what's being done 0:11:06.600 --> 0:11:08.880 about it. So thank you so much. Thanks Aarah, thank 0:11:08.880 --> 0:11:11.439 you for joining us for another week of the Daily os. 0:11:11.480 --> 0:11:14.440 We'll be back later today with the headlines, but until then, 0:11:14.600 --> 0:11:15.559 have a great Friday. 0:11:19.720 --> 0:11:22.040 My name is Lily Madden and I'm a proud Arunda 0:11:22.240 --> 0:11:27.040 Bungelung Caalcutin woman from Gadighl country. The Daily oz acknowledges 0:11:27.120 --> 0:11:29.280 that this podcast is recorded on the lands of the 0:11:29.320 --> 0:11:32.880 Gadighl people and pays respect to all Aboriginal and Torres 0:11:32.880 --> 0:11:35.800 Strait Island and nations. We pay our respects to the 0:11:35.800 --> 0:11:38.600 first peoples of these countries, both past and present.