He toi matua, he toi tangata, he toi ora. Ki aue! Tihei-wa mauri ora. Ko Te Hui tenei. E mihi atu nei. This week on The Hui. It comes with a lot of stigma, but for many, it's the last resort. - It may seem like a selfish move, but I'm not gonna just keep living like this. - We look at the barriers to get weight-loss surgery in Aotearoa. - It's just not in my budget to do it here in New Zealand. - This could be the motivation for us to try and bring down the financial barrier. - Plus, we look into the concerns around te reo and Maori data sovereignty with artificial intelligence. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023. He pae maunga tu te ao, tu te po. He pae tangata ngaro noa, ngaro noa, haere mai, haere. Tihei-wa mauri ora ki a tatou katoa and welcome back to The Hui. Weight-loss or bariatric surgery is often seen as a way for whanau to transform their lives, a surgery which comes with a lot of stigma and a high price tag. But more Maori whanau are turning to it, and they're going to great lengths to access surgery. Anei te purongo a John Boynton. - If there was another way, I would have done it. - An impossible choice. - And if I didn't do it, I'd probably be dead by now. - Saving your life, but at what cost? - It's all easy, because you just write a cheque. - It may seem like a selfish move, but I have one life. I'll get you to open now, hon. - Every day's busy for mum of three Eva Ngamotu. - So, what are you doing? - Well, I'm just gonna be doing, like, only three clients a day. - She runs a beauty business from her home in Taupo. - So popping up when you're ready. - While Eva is skilled at making her clients feel beautiful, it's something she struggles to feel herself. - Yay. It's a big insecurity of mine. Just opening up about probably my most vulnerable... insecurity is pretty tough. It's not easy being a girl or a woman. Society, social media ` everything is depicted for us to be a certain standard; unrealistic standards. Food and weight has always been a massive insecurity of mine. I had a real bad relationship with food throughout my early 20s; I struggled with bulimia, a lot. - At the moment, she's on a 12-day liquid diet, the first part of a journey which will take her halfway around the world. - If anything, I feel like it's a kick-start for me. I've been struggling with weight loss for about four to five years, with, like, really no success. - Eva is getting bariatric or weight-loss surgery ` a decision she's been considering for a long time. Cos a lot of people watching this will think you're a beautiful young wahine; you don't need this surgery. - Well, thank you, but I have to live in this body, and I wanna be comfortable. And I have one life. - To start her new life, all it took was a click on a website. So far, all her consultation for the surgery has been online. - I get, like, instant messages whenever I've got a question, Zoom calls, emails. I find the communication really good. - It's all online, because she's having the surgery done offshore. Did you think you would be flying halfway around the world to get weight-loss surgery? - No, never. It's just not in my budget to do it here in New Zealand. I looked into Thailand and Mexico were the other two options. I chose Turkey because of all the research I'd done, and I just felt, like, confident in myself that that's where I wanted to go. - Eva booked her surgery with Reyap Hospital in Istanbul. - Reyap Istanbul Hospital is equipped with the most advanced devices for the needs... - Is just looking at a website good enough, uh, for you? - 20 years ago, Dr Michael Booth started the first public health surgery here in Aotearoa, and he has his concerns about going overseas. - We don't know what the results of patients are who access surgery overseas. And I guess you fill on a form online, it's all easy, because you just write a cheque or whatever, and then you go and get the surgery done and come home, and you don't have to worry about appointments, and follow up, if anything is going to be through your GP. - The surgery itself, it's gastric sleeve? - It is gastric sleeve, yeah. It involves being put to sleep and having three small incisions in your stomach. And it's a keyhole surgery, and they use a laparoscopic scope to remove 80% of your stomach ` you're guaranteed to be losing a lot of weight. - Mm. - Yeah. - One must never be fooled that just because they've got small skin incisions, that they haven't had a major operation. - Eva is part of a growing trend of New Zealanders embarking on medical tourism, and for many, it's a financial choice. How much is it gonna cost? - It's gonna cost me just under $5000, New Zealand dollars, for the surgery. - Flights? - Flights are worth another $3000, so about $8000 total. - How does that compare to some of the prices you got here in New Zealand for the surgery? - A lot cheaper ` ones that I've looked at were around $18,000 to about $24,000. - Why does it cost so much? - You're looking at laparoscopic ports, anaesthetic time, theatre time; then there's the surgeon's fee, dietician, psychologist. Then there's post-operative ward cares. When you're taken into context with, say, a knee replacement, which might be $35,000; to my mind, it looks like good value. - So, $27,000 it cost to save my life, and it has saved my life, so it was worth it. - Whakatane local Mawera Karetai had her surgery here in Aotearoa. - If I didn't do it, I'd probably be dead by now. My life is transformed completely in every conceivable way. - Mawera is seeing the major benefits of having gastric sleeve surgery. - I was 140 kilos. - How tall are you? - 5'1". (BOTH CHUCKLE) I was a butterball. - Here we are a year later ` how do you feel now? - 70 kilos gone ` I've lost a whole person. Kia ora. Ko Mawera Karetai toku ingoa. - It's been a drastic change for Mawera, who's a well-known community leader in Whakatane. - I would always note the looks that people would give me, the judgement, the sniggering, the comments behind hands, and I don't get those looks any more. And I just... I feel really sad, actually ` I feel sad for the old me. - What was life like for you this time last year? - I was on a lot of medication ` for diabetes, for my heart, for my fatty liver, for my inflammation from my arthritis. I was not feeling overly optimistic about... the future. - So she tried to get surgery through the public system. - We're seeing more Maori and Pacific Island patients coming through in public and private, which is good. The problem in public is accessibility. - The system is set up to make it really, really difficult. - Mawera had to commit to a programme of preparation and assessment. This was a barrier. - Obviously it is hard for people to get to clinics. You just can't get time off work all the time. - I just realised straight away, as soon as I couldn't make the appointments, that they were never gonna sign it off. So here we are, set up for more health problems, for a system that wasn't designed by us or for us, to address problems that were not of our own making. Obesity is another symptom of colonisation. - Some people might say, 'Can you blame colonisation for obesity?' - Absolutely. Show me an obese Maori before colonisation. - Several high-profile Maori MPs have had weight-loss surgery. - The righteous anger of indigenous peoples all over the world. - This year, Te Paati Maori co-leader Rawiri Waititi spoke about his weight-loss-surgery journey. - The government needs to now start looking at how we can fund people if it's life-saving. I believe it's done that for myself. It's added years on to my life. - What did you make of him sharing his story and being open about it? - I was so pleased that he shared his story, until I got to the bit where he talked about his health insurance, and instead of talking about his health insurance, he should have been talking about how he was gonna lobby for a change to the rules around public funding for weight-loss surgery. - Mawera didn't have health insurance, so for her now to go private, she needed to access her KiwiSaver. But there were barriers to that as well. - The only way you can get it out is if you're going to die, immediately. - Despite her dire health, her surgery wasn't considered life-saving. - This is not a medical professional or anyone who's got any training in medicine saying, 'No'; this is an accountant making a decision about my life and my level of unwellness and my likelihood of death. - But she was eventually able to withdraw her KiwiSaver under financial hardship. - I looked for how I could use the resources that I had, to support my inspiration to save my life. - She's now guiding others who want to access their own KiwiSaver. Is it responsible to encourage others to take out their KiwiSaver to do this? - When it comes down to the decision to save your life or not save your life ` that's the answer to the argument. With bariatric surgery, it's not the magic bullet; you still have to do the work, and you still have to be willing to change, but it enables that to happen. - Mawera says bariatric surgery saved her. She's now living a healthy, active and happy life. - So, we've got our chooks making eggs for us, our planter boxes. We're growing 17 different fruit trees and vines on the property. - And you don't regret for a second using your KiwiSaver? - No, not even slightly. - Ready? Hold on. - Back in Taupo, Eva is spending time with her three tamariki... - Higher? - Higher. - ...before she flies to Turkey. - The two little ones are a bit too young to understand, really, what Mum's doing, and my oldest is really supportive. - Do you have to think about the risk involved in potentially, you know, not coming back for your kids? - Yeah. I mean, of course, I've thought about that, and it may seem like a selfish move, but I think I'm coming home. No, I know I'm coming home. I'm not gonna just keep living like this, being unhappy; I'm gonna be proactive about it and change it and make it better for myself. - Coming up after the break ` is there equity in bariatric health care? - As soon as the same people are getting different treatment, that opens the door to bias, and it's a slippery slope towards racism. - And we find out what happened with Eva's surgery. - I'm feeling anxious, scared, overwhelmed. (DYNAMIC MUSIC) - Hoki mai ano i te wa e iri mai ana a Puanga ki te pae marangai. A growing number of Maori are looking to access bariatric surgery. Some are taking risks by travelling overseas for cheaper surgery; others are using their retirement savings. So are there too many barriers in having weight-loss surgery in Aotearoa, and are Maori missing out? Here's the second part of John Boynton's report. (INSPIRING MUSIC) - I bike everywhere, cos I love my bike. I haven't used my mobility permit in probably eight months. In fact, I don't even know where it is, cos I don't use it. - Whakatane mum Mawera Karetai is seeing the life-changing impacts of having bariatric surgery. - There was just so much wrong with me, having to go into the hospital all the time for my heart and my liver. I cost a fortune. Thank you very much, taxpayers, for keeping me alive. Had I just been able to have bariatric surgery 10 years ago, I would have saved hundreds of thousands of dollars, I guess. - You know, a lot of people view it as taking, like, a lazy way out. - Dr Benjamin Wheeler is currently the only full-time Maori bariatric surgeon in Aotearoa. - There's so many different pathways that people walk, so many different journeys for how people come to the place, where they realise that their weight and their health are something that they need to have an operation in order to improve. - Does it worry you that more whanau Maori might take the risk of going overseas, because it is so much cheaper over there? - A couple of things that I worry about ` one is not all the operations are exactly the same. If I do an operation on somebody and it hasn't gone well, they can come and find me, and we'll have a korero about it and look for a solution. But if you have it overseas, the surgeon who's done it doesn't have to answer to you about what's happened. - Mawera in our story talked about some of the barriers she faced, but what are some of the barriers that you see in the public system? - Having to get up and go to the hospital and attend appointments ` that's one issue. And one of the great things about the pandemic has been the way telehealth has come in in a big way and brought that down. You know, if you've got a white collar job and you've got control of your life, great ` you can just tell the boss you're going. But if you're blue collar, if you don't have that kind of freedom, then it becomes really difficult. And then the more extra things that someone's got on their plate, the harder that's gonna get ` other whanau is sick, and you have to look after them, it gets even harder again. This is one of these barriers that sometimes put up by some of the hospitals is that if you don't attend the appointments, then you just get taken off the list. - What do you make of people accessing their KiwiSaver to have the surgery? - One of the issues with it is it's now become really unclear to me who can access their KiwiSaver and who can't. I don't like variability, because as soon as the same people are getting different treatment in different places, that opens the door to bias, and that's the slippery slope towards racism. At the end of the day, a superannuation fund is no good to you if you're not gonna make it to retirement age. You know, we know Maori life expectancy is lower; that in and of itself is an unfairness, you know, an inequity that exists. - How important is it to address those inequities for Maori? - You're looking at an area where there's always multiple overlapping issues ` it's not just that Maori are more likely to have problems with their weight, but they're also more likely to have things like diabetes and high blood pressure. They're actually more likely to not be given appropriate treatment for those things, and then they're more likely to be in a situation where they'll find it harder to provide the putea themselves, have additional barriers, in terms of actually accessing the care. There is no one strategy that's being deployed ` there's no consistency. And whenever there's variability in treatment, that's where the door gets opened to bias, to inequity, to differential treatment. You don't need to be a rocket scientist to know that Maori are gonna come out on the bottom of that. - Are there any solutions in the short term you think could really make a difference? - We're still at the tail end of the pandemic, picking up the pieces. And the problem is, is that it's hard to prioritise bariatric surgery at a time when cancer operations aren't being done. Doing weight-loss operations, doing bariatric operations, it's an investment that has a much bigger payoff later on. You know, someone who can have an operation when they are first diagnosed with diabetes, it can cure their diabetes, and that will save the healthcare system a whole lot of money ` that will save that person a whole lot of heartache, as opposed to them getting down the line to the point where their kidneys are failing and they're on dialysis. And now people are considering surgery as an option. One of the things that I'd like to see over time would be some of the decision-making handed back to iwi and to hapu. If you've got thousands of people applying for a small number of positions, you know, only so many people can have surgery; you know, the surgeons get overwhelmed with how they actually choose who they're gonna operate on, so... let the communities decide. - Thank you for your time, Ben. Tena koe. - Yeah, my pleasure. Thank you. - Now, for those wondering how Eva Ngamotu went with her gastric sleeve surgery, we've got a little update from her just days post-op. - I'm really happy with my choice of travelling to Turkey. The care was outstanding, and they really looked after me. I have no regrets not having surgery in New Zealand. I've lost 7kg post-surgery, which is day eight now, I'm really happy with how everything's going, and... I just probably wish I did this a little bit earlier, um, so thank you. Yeah. - Eva also told us she'd met, in Turkey, four other Kiwis, including another wahine Maori, who travelled there for bariatric surgery. Next, the world of AI and platforms like ChatGPT ` what it means for Maori, Maori data sovereignty and te reo. (DYNAMIC MUSIC) (DYNAMIC MUSIC) Kia ora mai ano. Ko hoki mai koutou ki ta tatou Hui. Platforms like ChatGPT have been described as the most exciting tech innovation of the year. ChatGPT will answer most of your questions, not always accurately, but what are the risks, and what's the impact on Maori, our data sovereignty and te reo Maori? Now joining me is Dr Te Taka Keegan, who, ChatGPT tells me, is a prominent figure in Maori technology and indigenous-language revitalisation and also says he's of Ngati Porou and Ngati Raukawa descent. E te takuta, tena koe. - Tena koe. - You're rolling your eyes. OK. Let's talk, first of all, about data sovereignty. Can data sovereignty ` Maori ` be protected by platforms like ChatGPT and AI? - It's the opposite. It's the antithesis of data sovereignty, cos data sovereignty and Maori data sovereignty's about Maori having control and protecting our data, whereas ChatGPT exists because no one's protecting the data; it's able to go take all the data, use it however it wants. So it's the opposite of Maori data sovereignty ` an antithesis. - Why would we use it, then, or why participate in it at all? - That's a very good point, and a lot of a lot of discussion has been about we shouldn't use it and we should stay away from it because of what it's doing ` because of how it's appropriating our data, so that's a good comment, and that's an argument; that's a fair argument. - But you are a computer scientist ` I mean, things like new platforms excite you, right? - Exactly. New science ` new computer science excites us, cos, as well as the misgivings, there's also opportunities, and some of the opportunities that exist in this kind of technology is really powerful. - What are they? Talk us through them. - So at the moment, you don't have no control about what it does or what it says. It's some international firm saying, this is how I'm gonna respond ` well, they're not even saying it; I'm not actually sure, but it's the software that's saying how it's gonna respond. But imagine if you could have it respond in a way like you wanted it. Imagine if, from a Maniapoto perspective, you could have it respond from a Maniapoto perspective and a Maniapoto reo and using Maniapoto history. Or if you wanted to go to it differently ` maybe you wanted it to respond from an Ngati Porou perspective and a Ngati Porou reo and a Ngati Porou iwi. Imagine if you had control to share your own information ` that's what Maori data sovereignty is about. And at the moment, that's not what this tool is doing. - Could it be amended and utilised in the way that you're talking about? Because I can see the benefits in that, right? As a student, that's what I'd like to look at. So can that be done now or do we have to restart the whole thing again? - So, we don't have to restart the whole thing again. We're actually doing some research at the moment to see if we can do that. One of the things we have to do is we, kind of, have to cut it off from the mothership, because every time you use it, it's feeding back, right? So we have to stop that ` we have to run a separate version, and then we have to supply it with our own data, cos it all runs on data. They talked about, um, colonisation of our data is the final frontier ` this is an example of colonisation of our data. But if we have control of our data and we have our own separate instance of the platform running, there's this kind of technology called transfer learning, where you can take what it's already been doing, and then refine it a little bit, so it works for your particular environment. - So, we can do that now or that doesn't exist yet, it's being worked on now? - It doesn't exist yet, but if you come back and ask me in a couple of months or so, I will be able to answer that question. I'm not sure. Like, I believe it's possible ` we're gonna have a good go at it. So yeah, let's see. - Who would control the tikanga whakahaere of a platform like that, if it was to be developed and available? - So, it's... the people that are using, well, creating the tool. So the people have control over the data. Our goal is we control it. At the moment, we can't. At the moment, it's just this beast that's uncontrollable. When they design the tool itself, there's a section in there that's the learning model, and then there's another section in there that's the chat facility, and there's some control over the chat facility ` for example, like, at the moment, it won't swear at you, or it will be nice to you. So there's that kind of control. We need to have a little bit of a look at it, but my thinking is, wouldn't it be able to give, like, a particular, rather than a Maori experience, an iwi experience? Because, as Maori, we don't really do anything collectively ` we do everything as an iwi. So I believe there's a possibility to have iwi control over this kind of tool. And that's what we're gonna have a look at ` how can we do that? - There still seems to me that there's some risk that would appear there. If there is risk, why would we risk it? - Because the benefits outweigh the risks, basically. We have an issue at the moment within Maoridom, where it used to be when it was the control of knowledge, like, traditionally, kuia, kaumatua had an opportunity to control that knowledge to their... and it wasn't really children; it's more grandchildren. But now what happens is we've lost that control, and if Maori children want Maori knowledge, they're quite often getting it off the internet, right? This would give us an opportunity to have another source of knowledge, that we controlled, and if we could use it to say, well, actually, you're not quite ready for that information, but we're able to give you this information, I think it would protect our children. I think a lot of the issues we have with our children at the moment is because they have this unlimited access, and maybe sometimes they're not ready for it. So that's some of the potentials if we have the ability to control it, and we don't right now, today. - What about now? So it's being used now ` I mean, I've seen people talking about waiata composition, the impact on publishers and their ability to be able to protect the intellectual property of their authors. I mean, these are all big issues that many, I think, hoped Wai 262 would deal with, and we're still waiting for an answer on that. What is the role of the government, then, in all of this ` should the government be doing something now, be more restrictive about the way in which our data is being shared internationally, or does it come down to us, as individuals, giving our data to an intellectual` you know, to another company overseas, essentially? - Yeah. The technology right now is very new, so we're not quite sure of all the ramifications. It's hard to regulate something when you don't understand where it's going. It's like, you know, when they invented the motor car, it was a few years later before they put road signs up, and you have to stay to the left and you can't drive 100. So we're not quite sure of the ramifications. I think what we should be doing is just keep an eye on it, seeing what's happening, and then thinking about what we can do about it. In the last few days, the European Union has talked about regulating AI, there's an AI bill out. One of the important things that that bill is looking at is making the users of these tools, or the developers of these tools state where they got their data from. - OK. - And if they could state where they got their data from, then that would provide some restrictions. - Ka pai. E te takuta, tena rawa atu koe. And I'm not sure if ChatGPT got the introduction right, but nevertheless, I thought I'd use it anyway. E te takuta, nga mihi ki a koe. That was Dr Te Taka Keegan. A kati, kua iria ake te korero a ta tatou Hui ki konei i tenei wa. You'll find links, as always, to our stories on our Facebook and Twitter accounts and on YouTube, or at newshub.co.nz Kia mau ki te turanga o Taputapuatea! Haumi e, hui e, taiki e! Captions by Faith Hamblyn. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023. Ko te reo te take. Na Te Puna Whakatongarewa Te Hui i tautoko.