- Kei nga manukura o te motu, tau mai ki Te Hui. Ko Oriini Kaipara tenei e mihi atu nei. Kia koutou katoa. Welcome, everyone, to the Hui ` Maori current affairs for all of Aotearoa. Inangi tonu ` a whanau with a rare genetic mutation. - Too many people are dying from stomach cancer. - How learning whakapapa can become a life-saving exercise for Maori. - Well, we knew it was genetic. We'd seen enough of the family tree to know it was genetic. - Do you believe there will be other whanau out there who have this gene but don't know about it? - Absolutely. Yeah, absolutely. - Then we meet Ngai Tahu father of three going toe-to-toe with Parkinson's disease. - This challenge ` it's with you all the time. It's on your mind ` how to react to it, deal with it and fight it. - How is Parkinson's affecting Maori? - There's no studies, actually, that look specifically at Maori living with Parkinson's. Captions were made with the support of NZ On Air. - Tena koutou katoa. While the rate of stomach cancer has been slowly declining for Pakeha and Asian populations here in Aotearoa, the overall rate among Maori and Pasifika is three times what it should be compared to the population size. One of the reasons is that Maori are far more likely to carry an inherited gene called CDH1. But thanks to the ingenuity and whakapapa tracing skills of one Tauranga Moana whanau, hundreds of lives are being saved. Kei a Sarah Hall te roangake o nga korero. (ELEGANT STRINGED MUSIC) - SARAH HALL: This is a celebration 25 years in the making. - Acknowledgements to everybody this afternoon ` to come together to celebrate life. - The McLeod whanau of Tauranga gathering together to remember a medical breakthrough. that has saved the lives of many of the people sitting in this room. - BOTH: # I told you, if you call, I will come running. # - Now they want all Maori to trace their whakapapa to see if they too could carry the same killer gene. - Get tested, cos the disease is not going away. (SOMBRE MUSIC) - Maybelle McCloud visits this urupa often. Three decades ago, her family were dying of diffuse gastric stomach cancer in terrifying numbers. There was talk the whanau was cursed for selling the hill behind their papa kainga. But Maybelle McLeod, a medical professional, didn't buy it. You, as a nurse, thought to yourself, 'Something's wrong here.' - Yeah. Too many people are dying from stomach cancer. - But you worked out that this can't be right. It's got to be hereditary. - Yeah. - Seeking answers, Maybelle contacted this man, Parry Guilford, a cancer geneticist from Otago University. When you first met them, what did you suspect was going wrong? - Well, we knew it was genetic. We'd seen enough of the family tree to know it was genetic. We didn't know what the gene was, of course, and we weren't sure` we knew how to be to find it, but we knew it was genetic. - Maybelle and her team got to work, tracing the whanau's whakapapa, taking samples of everyone they could find. - People who knew about our whakapapa or our genealogy had passed away, so we had to rely on books that had been left behind by` by the family, by the whanau and work our way this way, (CHUCKLES) downwards from there. - Using this machine, which took pride of place at the McLeod whanau reunion, Parry Guilford had an incredible stroke of luck. - Any idea what's caused the... - The human body carries 20,000 genomes, but it was only the fifth gene he tested that provided the answer. - Yeah, we got really lucky there, though. I mean` (CHUCKLES) So we got really lucky. So it could have been` we could have been still looking now. - The McLeod whanau carried what is called the CDH1 gene, which causes a mutation that can lead to diffuse gastric cancer. - For lab scientists who often just spending our lives in the lab, and all you see is the test tubes and the Bunsen burners,... - (CHUCKLES) - ...it's really nice to actually do something for people and to have a chance to come to an occasion like this is just, like, the most gratifying, wonderful thing. - For the past 25 years, the McLeod whanau have been able to stay one step ahead of the gene. They built this clinic on their papa kainga. - OK, so, we'll get some biopsies. - Every member of the whanau is tested. If they have the CHD1 gene, they can have their stomachs removed as a preventative measure. One of them was singer Stan Walker,... - # Oh, you pray for me, pray for me. # Oh, I love it when you pray for me. # - ...his aunt's intuition saving his life. - The ones that are coloured in black are the ones that died of cancer, but that's only up to a certain point. - Your curiosity and saying something was wrong has saved the lives of so many of your whanau. - I'm just glad that they don't have to die any more. - Do you feel proud of the work that you did? - I do feel proud. - It was a medical mystery that you all solved together. - Yes, yes. We solved it together. - Now the CDH1 gene has been traced in families all over the world. - Never made me a boil up. (CHUCKLES) - Here in New Zealand, there are 25 families who carry the gene, most of them Maori. Dr Karyn Paringatai is not related to the McLeods, but she too found out she carried the gene more than a decade ago and had her stomach removed. Do you feel the mahi of the McLeod whanau in many ways saved your life? - Oh, 100%, they saved my life. Whakapapa was central to the success of the whole entire project, and if it wasn't for... - Dr Paringatai now researches the importance of whakapapa and genetics. Her work emphasises the potentially life-saving benefits of reconnecting with your whanau. - My father was born and raised in Horowera, a small, rural, Maori community on the East Cape. In 1968, when he was 17 years old, he left Horowera to move to Invercargill for seasonal employment at the freezing works. His intention was to return to the East Coast during the off season, but he never did. - That meant Karyn was disconnected from her whanau. It was only when she went back to the East Coast later in life she found out she could be a carrier of the CDH1 gene. (INDISTINCT CONVERSATION) - I hadn't really had this idea of whanau and whakapapa and what it meant, and then, all of a sudden, I'm faced with this genetic mutation that is throughout my whakapapa. And I thought it was really` I think where more my struggle was ` not the gene itself and what that meant but just now being part of something bigger than just myself. - So what would you say to Maori who have lost contact with their papa kainga who don't go home? - Mm. (SUCKS TEETH) That I would really, really seriously encourage people to just do it. Digging back into your whakapapa and having conversations about medical histories, which is absolutely terrifying. And no one really talks about the things that are bothering them medically, but I think we need to ` we need to have those conversations. - Dr Paringatai now wants all Maori who have had a family member die of diffuse gastric cancer to seek answers ` answers that could be found in the CDH1 gene. Does the medical establishment throughout Aotearoa know enough about this gene? - Absolutely not. Absolutely not. Here in Tauranga, it's great, because they have established this really good system within their whanaus, but the rest of the country, not at all. - Do you believe there will be other whanau out there who have this gene but don't know about it? - Absolutely. - BOTH: # They say everything, it happens for a reason. - 25 years on, many of the people gathered here today are alive because of a miraculous medical breakthrough between the McLeod whanau and a geneticist from Otago University. - # Oh, that's you and me. # - Now the message is clear to other whanau ` understand your whakapapa to protect your future. - Get checked out. Make sure that everybody in your whakapapa... is tested. There is still people falling by the wayside in this day and age that shouldn't be. - So there are answers. - There are answers. Please, get tested. We didn't do this so that you can ignore it. - Na Sarah Hall tera purongo. E whai ake nei; coming up ` ka korero ahau ki a Malcolm Mulholland o te ropu Patient Voice Aotearoa. At Bunnings Warehouse we take a lot of pride in our lowest prices. I mean who doesn't want more money to shop with, you know. Even if it's a Black Friday sale, come to Bunnings, we'll beat our competitor's price by 15 percent. Bunnings Warehouse Lowest prices are just the beginning. - Waihape mai. Welcome back. The government's medicine purchasing agency Pharmac is reviewing the way it funds drugs for child cancer patients. Rule 8.1B of the pharmaceutical schedule allows all cancer medicines for children to be funded by the agency, but Pharmac is calling for feedback on this rule, citing rising costs and concerns around fairness and equity compared with other groups. It's a move that has raised alarm amongst the whanau and advocates of child cancer patients. Hei matapaki i tenei take kua hono mai a Malcolm Mulholland, mangai mo te ropu Patient Voice Aotearoa. Malcolm, tena koe. Thank you for joining us today. Tell us ` what sparked this review? - It came about as a result of a case that was taken to the Human Rights Commission by my colleague and fellow trustee, Fiona Tolich. So Fiona, at the time, was advocating for children of spinal muscular atrophy to have a drug funded called Spinraza. Thankfully, that's actually starting to happen now. But, basically, what Fiona was saying was it's great that children with cancer get the drugs that they need, and long may that continue, but we also need to do the same for children with a rare disorder. And that's where, if you like, the discrimination happens. And we need to bring all children on to a level playing field whereby they can receive the medicines that they need. That's really what's prompted this review that Pharmac are undertaking right now. - All right. And what are your main concerns with it? - My main concern is that Pharmac might ` and they have put this in the discussion document ` actually look to create a level playing field by taking away Rule 8.1B and not allowing paediatric oncologists to prescribe the drugs that they need in order to treat children with cancer. So rather than saying, 'For children right across the board, 'regardless of disease or condition, we're gonna fund what drugs you guys need,' they may actually go the other way and go, 'Let's take it away from children with cancer 'so that all children are treated equally,' and that would be an absolute disaster. - Yeah. Is Pharmac just underfunded, Malcolm? - It is. That's the root cause of this problem. Their margins are so tight, they have no ability to accommodate. It might be rising cancer costs, sure, in terms of the purchasing of medicines, although we always believed that Pharmac greatly inflate that in order to curry favour with the public. But, ultimately, that's what it comes down to ` it's a lack of budget. - OK. When Pharmac talks about equity with other groups, what or who are they referring to? - Yeah, good question. And sometimes you have to try and figure that one out. I know that there's a big push at the moment to create, if you like, equity with Maori and also with disabled people, and, you know, that's a lofty goal and should be applauded. What we don't want to see, though, is that efforts to create equity between Maori and non-Maori, for example, is actually used as a rationing tool. So, therefore, what we're getting at is let's just restrict use to Maori and eliminate the rest of the population. Absolutely, Maori need the medicines that they need, but so do the rest of the population. And in that respect` But we don't want to see it used as a rationing tool. - OK. So what impact, if any, will Te Whatu Ora have on this situation, Malcolm? - Yeah, I don't know. I mean, in the past, Pharmac have operated completely independently of the rest of the health system, and that was one of the criticisms that came out of the recent review, was that Pharmac can no longer operate in a silo, and, in actual fact, the Minister of Health himself said the independent days of Pharmac are over. What seems to be continuing to happen, though, is that Pharmac are still a law unto themselves and haven't yet been brought back in to the wider health system. They need to start having conversations with the likes of Te Whatu Ora and the Maori Health Authority to go, 'If we do this, 'what is the flow-on effect in the rest to the health system, especially in terms of cost?' because we know if you front-foot medicines, if you fund medicines properly, it creates savings elsewhere in the health system. - The question, then, is ` why isn't the government reining them in? - Again, really good question. I do not know why there seems to be a total lack of leadership and culture within Pharmac to go, 'You know what? We've got a problem. 'Yes, we give children with cancer the drugs that they need, and that's fantastic, 'but let's try and bring all children on to a level playing field 'by giving them the medicines that they need.' There seems to be a real lack of leadership. There was no suggestion in the document that they might be looking to create a different mechanism by which that can happen or a different fund, if you like. And there also seems to be a real lack of discussion between our political leaders, be it the Minister of Health or the Prime Minister, and Pharmac themselves in order to figure out a solution rather than putting the onus back on the public and saying, 'It's an either/or situation.' - Mm. So what could happen as a result of this review and how many tamariki are we talking about that could be impacted by it? - Yeah, so, again, it's actually quite difficult to try and ascertain the numbers affected. It could be anything as low as maybe 10 children a year or it could be as high as 100 children a year. We still don't have hard and fast data as to the numbers using Rule 8.1B. And so, yeah, whilst that may not seem like a significant number, every life counts. And we know that, overall, there have been some 1500 children treated over the past decade using Rule 8.1B, so that would suggest that the numbers are somewhat higher. But, really, every life saved as the role of 8.1B is an absolute victory. - Mm. Malcolm, I understand you've been a long-time advocate for cancer patients, and that comes as a result of your own late wife, Wiki, her diagnosis with cancer, and it's really actually sad to hear that you yourself have recently been diagnosed with cancer. E tino aroha e tu ana ki a koe, e hoa. Heoi ano, I wonder, as a patient, are you discovering things about the health system you hadn't realised before? - I've been quite fortunate in my own experience that my cancer, prostate cancer, was picked up, but I must say, the way that that came about was a complete surprise, and that probably did highlight some of the shortcomings of the health system overall. So I was just very lucky that I had a passionate medical specialist who insisted that I get a PSA test, which is what picked up the prostate cancer, and things from there happened pretty quick for me. But I did have to go private because there were no guarantees in the public health system that I could be operated on in time. A couple of things that I found along the way ` one is that we don't have any screening guidelines when it comes to prostate cancer. All the ones that we do have are actually well out of date. They're about seven or eight years old. And the other thing I learnt, yet again, is that we don't fully fund medicines that we need to to treat patients who have prostate cancer. There are two or three drugs that are funded in Australia that are absolutely the standard of care. They're not funded here. - Malcolm, just very quickly, you've have started a petition on Rule 8.1B. What message do you have for Pharmac? - Please listen to the public. Nobody wants to see this happen. Come up with something inventive. Come up with a particular mechanism by which children who need medicines can get the medicines they need. That's about creating equity. Don't take it away for children with cancer, because if you do, children with cancer, in some situations, will die. And that should not be happening in today's age in Aotearoa. - Tena rawa atu koe. That is Patient Voice Aotearoa mangai Malcolm Mulholland. Thank you very much for your time. And e te iwi, consultation is open on Rule 8.1B until Wednesday December the 14th. You can find details on the Pharmac website. After the break; hei muri i te whakatairanga ` we meet the man going toe-to-toe with Parkinson's disease. - Tahuti mai ano. For years, it looked like the one health statistic where Maori were best off, not the worst. Maori appeared to develop the debilitating brain condition Parkinson's disease at just half the rate of Pakeha. But worrying new evidence is bad news for Maori, and researchers want help from whanau to find out what to do next. Now one man is taking up the fight with Parkinson's. A kei a Natasha Vela tenei purongo. (UPLIFTING GUITAR MUSIC) - NATASHA VELA: Johnny Boyle... - See ya later. - ...or as they call him here, Johnny Rock-Star, starts most Thursday mornings with a sweat up at Unruly gym in West Auckland. - WOMAN: All righty, team, we're gonna get this party started. - This proud Ngai Tahu dad and westie has been coming here for more than five years. - Let's go ` 10 seconds. Good work ` nine. - But this is no ordinary boxing class. Here, students aren't just working their muscles; they're also working on their brains, because Johnny and his friends all have Parkinson's disease. - This challenge ` it's with you all the time. It's on your mind ` how to react to it, deal with it and fight it. - Parkinson's is a degenerative, incurable brain disease. Patients often have tremors or shakes in their hands or legs and difficulty walking, thinking or speaking, symptoms that get worse over time. But exercise like this Parkinson's-specific counterpunch class can really help. - It was good. I pushed myself hard, cos I hadn't been for a couple of weeks, But I can feel the neurones firing. I've got a tremor now, and I'm a bit shaky. But I know, later on, I'll just feel so much better for it. - Statistics are sketchy, but it's estimated around 12,000 people in Aotearoa live with Parkinson's, and that number is set to explode. - It's the fastest growing neurological disease or condition in the world. And we estimate that, yes, that the figures will double in New Zealand in the next decade or decade and a half. - Right now, statistics show 114 out of every 10,000 Maori have Parkinson's. For Pakeha, that figure is 223. Johnny's been throwing himself into every available Parkinson's activity since he was diagnosed more than five years ago, but he's yet to meet another Maori with the condition. - None. No, no. I haven't met any. There's a gentleman from the Cook Islands, uh, a gentleman from Tonga. The rest are white New Zealanders. - Johnny and his three teenage daughters share a coastal home surrounded by native trees and birdsong. The whanau is close, but they've been brought even tighter by Johnny's diagnosis. - I went through a couple of life-changing events ` losing my job and my marriage ended and stuff. And they were really big curveballs that I hadn't ever expected. - But those challenges helped prepare Johnny for his diagnosis. - Dealing with those actually put me in really good stead for this big life change, so I just kind of took them on the chin, and it was like, well, you've got it. There's nothing you can do about it, so there's no point sitting and sulking and being upset and saying, 'Why me?' and that. I want to take the opportunity to talk to him about donating my brain. - Yeah. - For all his positivity, it's not always easy. Johnny is open about the hardships of living with Parkinson's. He's not working, he can't drive, and he occasionally spends days in bed. - OK, Google, play me a video. - COMPUTERISED VOICE: Sure. Playing recommended YouTube videos. - TEARFULLY: I can deal with it and get on with it, but my daughters,... (EXHALES SHAKILY) I struggle with them. Yeah, so, you know, I can get up and I can go to the gym and get on with it and fight and that, but they see me some days struggling to get out of a chair and talk. EMOTIONALLY: And, God, that must be hard ` hard for them. - This morning, Johnny has delayed taking his medication, and the effects are clear ` his speech is affected, there's a notable tremor in his arms and legs. - The meds I take, I think it's about 16 or 17 a day. - Wow. That's as well as...? - As well as a pump. - Johnny has chosen to face Parkinson's head on, volunteering for numerous research projects, even at a personal cost. - I've been in various studies. I was in a study for a new medication, which had a bad effect on me in the end, and I ended up in hospital for a couple of weeks, so that wasn't fun and games. - So why does it appear that few Maori are developing Parkinson's? Are they hidden? Or is no one looking? - The true figure of how many Maori people in New Zealand have got Parkinson's is not known. - But now new research is pointing to strong reasons why whanau need to become familiar earlier with the symptoms of Parkinson's. - For many years, it was felt that maybe Maori had been advantaged, for once, in terms of the health statistics, but, unfortunately, we don't think that's the case any more. There's very, very recent research by the University of Auckland into something that's called the PINK1 gene, and, unfortunately, this discovery could mean that Maori have got a predisposition to early-onset Parkinson's, as is the case for some Pasifika people, principally Samoan and Tongan. So this is a very, very new discovery which would be quite distressing for Maori and Pasifika communities. - That could mean that Maori are significantly more at risk of developing the disease as early as their 30s and 40s. Andrew Bell from Parkinson's New Zealand says an early-onset diagnosis brings increased complications. - But when you're diagnosed in your 30s, let's say, I mean, not only is there the shock that you've got this degenerative neurological disease that is going to shorten your lifespan but you've got responsibilities around children, around family, around your career. So do you tell your boss? There's a challenge for you. You know, what happens if you drive a truck? How long can you drive your truck for with Parkinson's? And when are you responsible? Those are the real life challenges that face you when you got Parkinson's. - There's still little known about how Parkinson's develops amongst Maori. - There's no studies, actually, that look specifically at Maori living with Parkinson's. COOS: Aren't you beautiful? - But Ngai Tahu's Katrina Bryant is hoping to change that. She's part of an Otago University team about to launch a groundbreaking study into how Maori and Pasifika experience Parkinson's. The study received $500,000 from the Michael J Fox Foundation to fill the gap in the research. - So that's what we're hoping to do with this research, is engage Maori to collect their voice, so they can let us know how to best provide service for Maori. - Katrina and her team are looking for 30 Maori and 30 Pasifika with Parkinson's to be part of their research. As always, Johnny is a starter. - If you die here, I've gotta get your brain to a brain bank, right? - Yeah. - In fact, Johnny is so committed to the cause, he plans to donate his brain after his death to Auckland University's Centre for Brain Research. - My brain is not gonna be any use to me when I'm gone, but it can be used for medical science. - He doesn't expect other Maori to follow suit, but he is encouraging them to look for Parkinson's symptoms and not to be afraid if they're diagnosed. - Share. Tell people about it. Don't be scared of it. Educate yourself. Take on board what the experts say. Yeah. I mean, you are still you. - And life doesn't end with a diagnosis. - No. Oh, no, you can have a good quality of life. You're not that` that poor, sick man sitting in a chair who can't get up. I've got a really good life and lots of really good friends. - And with his whanau by his side, this rock star won't be throwing down his gloves any time soon. - Kaore ia e rikarika. Nga mihi ki a koe, Johnny. Kia kaha tonu koe. To you and your whanau, thank you very much for sharing your story with us here on Te Hui. Na Natasha Vela tera purongo, e te iwi. Heoi ano, kua hoki tenei manu ki tana rongohua mo tenei wiki. Tena koutou katoa. Noho ora mai. Captions by Sophie Pearce. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2022 - Ko te reo te take. - Na Te Puna Whakatongarewa Te Hui i tautoko.