kua waipukehia a Tauranga Moana i te roimata, kua mu nga papa kanikani o te motu. E te tungane Hone Te Ihi-o-Te Rangi Ngata, te aunga o te moe ki a koe. Ko Mihingarangi tenei. E mihi atu nei, e tangi atu nei. Welcome to The Hui, Maori current affairs for all New Zealanders. E taro ake nei... Maori leaders unit over Oranga Tamariki's removal of Maori babies. Why don't we get the resources to the people who can actually do the job, who know the families, who are non-judgmental and who know the complexity of the lives that our families are living? Now they're launching their own inquiry into Oranga Tamariki. That's by Maori, for Maori, with Maori. So that is the difference! Is it time for a separate Maori agency? We want the involvement of Crown agencies to be a lot less in the lives of our whanau, because it only messes them up. Karahuihui mai. Later in the show we'll discuss the new inquiry into Oranga Tamariki, engari matua ra, i tenei ata... Last year, 41-year-old mother of three Wiki Mulholland was diagnosed with advanced breast cancer. Since then Wiki and her husband, Malcolm, have not only been battling cancer, they've also been fighting Pharmac for access to the vital drugs that could significantly prolong Wiki's life. After months of lobbying, marching, petitioning, the Maori Affairs Select Committee have announced an inquiry into health inequities that Maori cancer sufferers face accessing the treatment they need. But Malcolm Mulholland says there is much more that could be done and should be done to help Maori with cancer. And he joins me now. Tena koe. Mm. Kia ora. Firstly, kei te pehea a Wiki? How's Wiki going? Uh, yeah, she's in a pretty good space. We've just had a meeting with her oncologist in the previous week, and she's relatively stable. There's a slight sign of progression in her spine. But he's confident that he can cut that one off at the knees. It's been just a little over a year. Yes. Yeah. It's been one hell of a year. Yeah. We've been through a roller coaster of emotions, I suppose, in the first instance, trying to come to terms with her diagnosis and what that means for us as a whanau. And then what we didn't expect was to be put in a position where we had to be battling Pharmac and the government in order to secure drugs that could significantly prolong her life. Because as Wiki says in some of the videos she's done, and the diaries that you have bravely shared with the public is that she has been a good citizen. She's been on the board; she's been at the soccer games and the baseball` the softball games; and she's the baker in the whanau and the board of trustees. In all of your experience, did you ever consider that this might be the fate for your whanau? Not at all. And, you know, like most people, we were under the impression that if you fell ill in Aotearoa, then you either receive surgery or you get the pill that you need. And what we found subsequently is that couldn't be further from the truth. Our health system, generally speaking, I think, is in a crisis. And it's really scary looking down that barrel, for us at the moment. So it is not the inquiry into Pharmac that you wanted, but it is the Maori Affairs Select Committee inquiry into inequities for Maori, focusing on the cancer care. I mean, it's a step in the right direction? Yeah, it is. It is a step in the right direction. I mean, initially we asked the Maori Affairs Select Committee and the Health Select Committee for an inquiry into Pharmac, and obviously the Maori Affairs Select Committee have felt that they needed to widen the brief. Our only reservation, I suppose, is that when they make determinations when they release their report, that the focus on Pharmac is not lost. Because for us, that's a big driver, in terms of what we do. What practical things could Pharmac do now to help, to support people like Wiki? I think, primarily, the first thing Pharmac should be doing is asking their minister on a daily basis for an increase in their budget. We know through the research that we have done and that of others the people in New Zealand die prematurely in their thousands because they don't receive the medication that other patients overseas are receiving right now. And because you're such an amazing researcher, take me down there, because you have learnt a lot about Pharmac and the model that we have here. Compared to other countries in the OECD, where do we sit? We are pretty much at the bottom of the heap. The Pharmac model was good when it was first established back in 1993. But the world has moved on since then. There have been some major developments in modern medicines, and so when you look at where we are ranked in comparison with other OECD countries, we are at the bottom of the list when it comes to the funding of wanted medicines. And so when we talk about funding, if, for example, other OECD countries around about 14% of their health budget they are spending on medicines, where are we? We are under 5%. 5%? Mm. And has it got better or worse? It's getting worse. The waiting list that Pharmac have, the waiting list for drugs to be funded, is actually increasing. So when we first began this journey, I believe it is around the 120-mark. There is a report that will be released soon that shows we are now at 130-mark. It's clearly a case of there not being enough budget in order for Pharmac to finance these drugs that New Zealand experts say is the world standard. So if a drug like Ibrance, which is the drug that Wiki needs, comes into our system, it gets assessed. And what is the duration of that? Because I heard someone from the UK system telling us it was about nine months, on average, that it took to assess a drug, and then another nine months to get it on the market. Yeah, pretty much. There is no time frames in New Zealand. So one of the drugs that Wiki needs to be taking in conjunction with Ibrance is Fulvestrant. Now, that drug has been on the Pharmac waiting list for 14 years. We have no idea whether or not the drug will be funded and how long it will take for the drug to be funded. And so when you ask these questions, what response do you get? We get the response that Pharmac is the envy of the world, that 80% of medicines don't say what they do on the tin, that, really, we shouldn't be complaining. So you've asked for a review. Mm. When was the last review of Pharmac? There has never been one. So Pharmac, which is about 25 years old, has never been reviewed? Correct. Do you have an example of another government organisation that gets reviewed more frequently, like, for example, the spy agency GCSB? GCSB has been reviewed about 10 times in its existence, since 1997. How do Maori fair in the Pharmac model? We do worse because we tend to be pohara, and we also have a lower rate of private health insurance. And so when it comes to the ability to self-fund drugs, we're certainly at the bottom of that line. What will your submission be to this new inquiry? My submission will be ` hear the people speak. Look at what's happening on the ground. Take a good, long, hard look at the state of cancer care in this country. And in particular, look at how many drugs are funded overseas and how many drugs aren't funded here in Aotearoa. It is an absolute crisis. I would go as far as to say that the system is now in meltdown. And it will have to be quick` Yeah. ...for people like Wiki. It will have to be quick. I mean, since we began this process in October last year, there has been over 150 women in one organisation we've been involved with who have passed on. The majority of those women would have benefited from either Ibrance being funded, or another drug Kadcyla. I mean, it is beyond belief that, for example, the minister received the cancer care plan, and he said, 'I need time to digest this.' Well, sorry, people don't have time. They need a decision made, and they need a decision made tomorrow. So what do whanau like yourself do in the meantime while you're waiting? What kind of support groups are there? You've been doing lots and lots of support for other people. Yeah, so, I mean, through this process, when we first went public, we were under the impression that it was only in relation to one drug that wasn't funded. We've had other cancer patients reach out and go, 'Hey, I've got lung cancer, and for my particular type of lung cancer, Keytruda is not funded, 'yet it is funded in 42 other countries.' We've had a rare disease, Pompe disease. They've put their hand up and they've said, 'Hey, there is one drug that treats us all. It's funded in 75 other countries but not here.' It doesn't matter what disease you look at; there are drugs that are not funded that could significantly improve their lives. And so through that process, we've established Patient Voice Aotearoa. We currently have about 3000 members in the space of a month, and we have 15 regional branches. I think that really demonstrates the need on the ground for drugs to be funded. What's it called again? Patient Voice Aotearoa. Patient Voice Aotearoa. We'll put that up on our Facebook page. Ka nui te mihi atu ki a koutou, me to whanau. Nga manaakitanga o te wahi ngaro ki a koutou. Kia ora. Thank you for coming in. Kia ora, Mihi. Ka mihi hoki ki a koe, Wiki. Kia mau tonu mai ra te titiro. Ka tahuri te aroaro ki a Oranga Tamariki. (DRAMATIC MUSIC) An inquiry into Oranga Tamariki has been launched by a powerhouse of Maori leaders at a packed hui this weekend. The inquiry is one of four being conducted into the organisation tasked with caring for our most vulnerable kids and will focus on the removal of tamariki from their whanau. I spoke to Merepeka Raukawa Tait, the chair of Te Pou Matakana ` Whanau Ora's commissioning agency ` who are leading the inquiry, and began by asking what's different about this one. It's by Maori, for Maori, with Maori, so that is the difference! And, of course, what we see is inquiries and reviews done by others who just don't see things through a Maori lens. And why should we always be accepting of somebody else's review, particularly when the majority of the children are ours? So a number of those reviews will be looking at the uplift or taking of babies. What's your brief? We want to look at the practices as they are right now. Because we know they're not consistent. I mean, the information that has come to us from all around the country asking is that we would look at this, if we could consider this. So our brief will be looking at the practices as they are right now, because they're not good. They're not good, and something has to change. Children's Minister Tracey Martin, when told about this hui, said she had not had any contact with Whanau Ora Commissioning Agency and she didn't know what any of the issues were because you hadn't contacted her. Did you think maybe you should have? Well, the call came from throughout the country to ask what we were doing, the commissioning agency was doing, about what we had seen... what we had seen in Hastings. And so it was really a request from iwi leaders to say, 'Listen, let's talk about this. 'These are our children; these are our Maori mothers who are being impacted by a government agency. 'We need to talk about it and think about it and think about ` 'what do we need to do to look at the situation and to see that there's going to be improvement?' The government` Well, the Children's Minister, Tracey Martin, said that she had got another 1.2 billion, I think it is, for Oranga Tamariki. Is that a win for her? Well, that really rather annoys me, because why would you put another extra billion dollars into an organization, to make it smarter after the event? I would rather that we put that money into organizations such as ours, the Commissioning Agency, because we know our communities. We get a foot in the door. So we could do so much more, and we are there prior to anything happening. Isn't that what Whanau Ora was meant to be, though? Wasn't Whanau Ora meant to be the organization that worked for Maori, with Maori, alongside the Crown? Well, that's all very well to say 'alongside the Crown', but the Crown doesn't want to work alongside of Whanau Ora, the commissioning agency. I mean, we've been in existence for a number of years now, and they really are dragging their feet. I don't know why, because we want the best. We want the best for our families. And we want the involvement of Crown agencies to be a lot less in the lives of our whanau, because they don't do anything substantial. If you look at all of the issues, if you look at the housing situation, if you look at labour force participation, if you look at health, justice, we are there at the wrong end. And so why don't we put everything and frontload the investment and get the resources to the people who actually can do the job, who know the families, who are non-judgmental and who know the complexity of the lives that our families are living? So at a governmental level, you are saying that the Crown is not working so well with Whanau Ora? They are making the decisions, and I guess you are just having to pick up and follow. But down in the grassroots, Oranga Tamariki and your Whanau Ora navigators ` we are hearing from the navigators that Oranga Tamariki doesn't even respond to their calls or their offers of support for the people. Mm. Mm. What are you hearing? Well, navigators are from the community, and they are in the community. And our whanau will talk to navigators. First of all, they will talk to them before they would ever go and talk to anybody from the Ministry for Children. I mean, that is actually quite a despised organization. I thought they were disliked. What I have heard in recent weeks suggests that it is not just disliked; they are actually despised. So people will not go in seek support, and when they want the information that they really actually do need, nothing comes back to them. But navigators can help. They can help families to navigate the system so they can get the information that they need. But the ministry doesn't even talk to the navigators. And that's really quite sad. Grainne Moss, CEO of Oranga Tamariki, would say, 'Well, actually, that's going to be taken care with this new legislation 'where they have to partner up with iwi, the co-designs.' Do you have faith in that mechanism? Well, legislation can help, but I mean, we've had legislation since Africa, basically. And that hasn't helped. So, you know, legislation is there, and we hope it would make a difference. But unless there is a willingness, a willingness to understand that Maori can be good parents, and the majority of Maori are good parents, where there is an issue where the child is perhaps at risk, then of course we want to make sure that the child is safe. But we also want to make sure that they are not disconnected from the whanau, that they can thrive. And that's not going to happen if they are being taken. And so we have to make sure that as leaders, we exercise our responsibility to do something about it. And that's what we want to do. The ministry gave itself five years to implement this new legislation, and they are two years in. Grainne Moss says she's pleased with the three iwis under her belt. Could she have done better? It's a tough job. It's a tough job. There is no doubt about that. But you can't expect families to hang in there for five years. It has to be a quantum leap and a quantum change that is made right now. And you need to change the culture, and we know that you got have the right people in the right jobs so they can do what's required. Many Maori women ` Dame Tariana Turia, Leonie Pihama ` are calling for the resignation of Grainne Moss. Issue fit for the job? Well, that is for her minister to decide that. But I would say that what I am hearing now is alarming. It's absolutely alarming, and it's coming from all over the country. And so I would've thought that the CEO would have been out and about and saying, 'Listen, I want to know what's going on, and I'm going to get on the road for the next two or three weeks, 'the next two or three months, because I want to know 'if we've already been doing some of these changes in the last two years. Has anything really changed? 'Or am I just getting glowing reports saying everything is great, 'but in actual fact, it is not and nothing is changing on the ground.' If you hear from the Maori families out there, you will know that nothing much has changed, and in fact it's got worse. Many Maori are refusing to use the name Oranga Tamariki. Mm. Is that a name you think is fit for this organization? Well, Oranga Tamariki now has connotations, for Maori, in particular. And we do tend to use Maori words, kupu, when it suits us ` that's government agencies. And I think that's wrong. I do think it's wrong. And I prefer now to use the Ministry for Children. And I prefer to say they're taking children rather than uplifting children, because that's in fact what they are doing. Is this a kaupapa that you are committed to following through with, to the end? Oh, absolutely. Absolutely. It's not just about our children either. It is actually about the practices. But more importantly were worried about the health of our young Maori mothers. We're really worried about that. When you take a child from a mother, that can be soul-destroying. And then of course later on, when they try to find out what's happened to her babies ` no information. The grandmother said contact us, and particularly, I have to say, they contact me, and they say, 'Were trying to get some information, Merepeka. We get no information. 'We don't know where our mokopuna is.' I mean, who does that in this day and age? As a good treaty partner, do you urge the Crown to release those numbers so that at least you've got a good place to start? Yes, yes. I mean, you do have to have hard data, and if their numbers are alarming, then you know that you've got a massive piece of work on your hands. And it means everybody has to work constructively together to make sure that we do have some reduction in these numbers. And if you don't know what the numbers are, and if people aren't sharing them, then it's making it so much more difficult, and this is not the time. This is a time to be working constructively together. Hei muri i nga whakatairanga, ka tu te paepae torangapu. We talk politics after the break. Auraki mai ano. Well, here to discuss all the big take of the week, I'm joined now by the Best of the Bay, former Associate Minister of Health and Finance, the Honourable Tuariki Delamere, and writer and commentator Shane Te Pou. Kia ora! Tena korua. Kia ora. Talking about the Bay there, which is the best part of the Bay? Kawerau. (LAUGHS) Clearly. And you would be up the Coast? I plead the Fifth Amendment. I'll get in trouble if I answer that one. Except... Somewhere between Tauranga, Kawerau, and Whitianga Bay. That's a very big area. Except you did` And Opotiki. Except you did work in Kawerau for several years so that's put to` Hey, I went to Tauranga Boys College, you know? The two Canes. Let's get into it. Captain New Zealand. Shane, Maori Affairs Select Committee looking into Maori inequities, focusing on cancer treatment. We've just heard Malcolm Mulholland there. Should it have been stronger` Should it have been the Health Select Committee? It should've been the Health Select Committee. You know, really, I think that they need to start. This is supposedly the year of delivery. I don't think they have delivered enough. I thought it was a good budget, but now they've got to put` they've got to execute it and actually do something. This issue with Pharmac can be easily fixed. It's about money. It's about money. We have a $5 million surplus. We have an international debt ratio that is low. We have plenty of opportunity. Money is cheap at the moment. I think interest rates are running at about 1.5%. We could fix this tomorrow if we had the political will, and we need to have the political will. A bit of kindness. Bit of kindness. Yes. For the well-being. Yeah. As the former Associate Minister of Health` That's right, wasn't it? Well, I had two hats ` Health and Finance. On the health side` Malcolm Mulholland says it's got worse. Do you agree, and is Pharmac a model that suits us now? Well, I think the reason it's got worse is because we can do more. Mm! People used to tell me that health care in the '50s was wonderful. No, it wasn't. We've moved on. But it's expensive, and so while you may want it, on the other hand, Grant Robertson's got to balance up... Everyone's got their hands out, but, yes, I think Pharmac is a model that needs significant, substantial revision. Yeah, what about the effect that it's never been reviewed? Is that not` Does that surprise you? No, it doesn't surprise me. The problem with it is it's a bit like Oranga Tamariki. And these government departments, they're clunky and they're big and they're not able to move easily. That is the problem. I'm actually coming to the conclusion that we need to move as much we possibly can to the local community. Big government hasn't worked for us, particularly for Maori, for the last so many years. It's not going to. I think even if you chuck more money at it, that might not be the answer. I know I might have just contradicted myself, but it's also about the delivery mechanisms, and I think community-based delivery mechanisms are the answer. You know, I know you said there that there are so many people to fund and those kinds of things, and it's got to be about balancing the books, but when you think about the opposite to the Pharmac is at the preventative end, someone like Wiki Mulholland wouldn't have even qualified then, because as a Maori woman who is more likely to get breast cancer, she doesn't even get a mammogram at 40. Yeah, and that is one of the problems. Also, I think one of the problems is the Pharmac model basically says we need to investigate these drugs. Me, as a former Pharmac administer, me, as a current cancer patient, I'm happy to say, 'Look, if the Australians give the OK, Canadians, USA, Great Britain, France, Germany, 'that's good enough for me.' Why are we wasting time and zillions of dollars doing our own investigation? That's an arrogance that we think we are so big, but we are not. We are small. So pair up with Australia or the UK and just say` All of them. Absolutely, and` What kind of a spend of the Pharmac would that be, that investigation? Look, I'm not sure. 10, 20, 30? Oh, I don't know. It's 20 years since I did that. But here's the other thing. It's exacerbated. Maori are particularly under stress in this issue because the reality is that health care, the number one factor for health care is your zip code. If you live rurally, if you live provincially, as many of our people do, you're not going to get the level of care as people like myself and Tuariki that live in the leafy suburbs and are bungalow dwellers. That's just the reality. Let's kick on to Whanau Ora. Dame Tariana Turia, at the hui, is saying we are at war. Yep. It was a packed house. They had to turn people away. They had 400 registrations, and they can't fit anyone any more. Do you think this is the Foreshore and Seabed issue of this decade? I'm not sure, and I'm not sure whether the aristocracy are the answer, actually, and I think we do have a growing Maori aristocracy, and many of those people represented at the hui in Mangere. I do wish them well. But again, I think if we are looking for big answers, big solutions, I think were going to get more of the same ` 1700 kids taken up ` the vast majority are Maori. Year before, it was a little less. It's actually growing. It's a growing industry. 68% now. Yeah. In youth residences, it's actually 80% now for Maori children. What is the solution, if not this hui? Well, one of the solutions, I think, is you need to have, at executive management, someone who actually understands Maori. And no disrespect to Ms Moss, but she's Irish. She was well-experienced in looking after old people, not young babies. She has no knowledge of Maori. They would argue that their executive Maori, Hoani Lambert, would fill that space. Is it, as you say, in health that it is got to be regional solutions for regional whanau? It has to be regional. It has to be local communities. It has to be hapu. It has to be iwi. Now he's kind of saying, 'We can look after our own tamariki.' Give it a go. We have` We have nothing to lose. Cos the other thing is we have to remember ` not only are these kids being taken, but they are lost in the system forever. Once they're in the system, they're lost in it forever. And for one minute, for us to think that if our kids are in state care, they are safe, it's just a fallacy. Yeah. I mean, Oranga Tamariki are at the bottom of the cliff, trying to catch those babies. Yeah. We need them at the top, working with whanau, hapu and iwi. As Merepeka Raukawa-Tait said, the billion dollars it should've gone to Whanau Ora, perhaps, to do prevention, doing the parenting courses` I agree with Merepeka. She probably should've been the chief executive. And we know also, eh, that there is nothing more than an uncle or auntie or nanny and a koro going in and saying, 'Look after those bloody kids properly. Do it properly.' And that's the sort of thing that government agencies can't do. We've got to take responsibility and use a model that is receptive and responsive to our people. A long way from Kawerau, in the South Island, Westland Milk is up for sale, with possibly some foreign buyers looking at it. Is this what Shane Jones should be spending the billion-dollar chequebook on? I don't think that he should be paying out farmers, because it's the owners, the cooperative` Should the government buy it? No, well, look, I think we need to look at the bigger picture. The farmers have had it very good. All they've done is simply sell off white powder ` it's like their cocaine ` to the Chinese, without investing in added value, and that's the real issue. If we have added-value facilities here in New Zealand, we get better income, better outcomes, and I think the farmers need to take responsibility for this, and we ought not to bail them out. Your thoughts on the Westland Milk sale? Well, my thoughts on government buying into commercial factories is that's not where they should be. We have seen that New Zealand before. It was a disaster, under Muldoon, and it'll be a disaster again. What do you think of Minister for MSD, Carmel Sepuloni, came under fire this week having to front up with people lining up for hours and hours outside WINZ offices? I thought it was a pathetic response, actually, and a bit embarrassing. And I think that what she should've said, and I said to Peeni Henare, 'Just show a bit of humanity, Peeni.' Say, 'Let's get some tents up. Let's get more staff here. Let's get some kai here. 'Let these people at least get to a wharepaku`' Tuariki? Look, you're a minister. You front up. That's what you should do. But all the ministers are like that. Should we set up some tents and get some kai into and start feeding these people? It's a good idea? Practical? Well, it's better than wasting money on a lot of things they are doing. Ka pai. Tena korua. Kia ora. Thank you for joining us today. Hei tera wiki... (UPBEAT ROLLING MUSIC) It's a road trip with a difference. Anton Matthews and his Fush crew ` serving up kai with a side of Te Reo all around Te Wai Pounamu. Ia te taone, ia te hapori, kei te kite he rite tonu te hiakai me te koingo i tenei mea, ki Te Reo. His sister, Maia, is just as passionate about sharing the language. Penei hiakai ana koe ki to tatou nei taonga, he pikoko ana koe, nau mai, haramai. Kua tuwhera nga kuaha ki te marea. Kua hikina Te Hui mo tenei ra. Pai marire ki a tatou katoa. Nga kupu hauraro na Glenna Casalme. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2019 He mea tautoko na Te Mangai Paho. The Hui is made with support from NZ On Air.