Captions were made with the support of NZ On Air. - E tangihia ra te hunga e arahina ana e te pokai kura ki te mate. Te hunga e kore warewaretia e kore e hoki muri mai ki a matou kei te hahatanga o te whenua. Nga mate o te wa, haere mai, haere. Tatou kei te ao turoa, tihewa mauriora, and welcome back to The Hui. Selling their family home, crowdfunding or packing up and moving overseas ` these are just some of the desperate measures whanau are forced to take Myeloma is a blood cancer which kills around 200 Kiwis every year, kia toko ake i te ora ki te hunga ka pangia e te mate nui whakaharahara nei? The government has injected a record $604 million into the drug funding agency Pharmac. But blood cancer patients say they are missing out on game-changing medicines, Ruwani Perera has the story. (SOMBRE MUSIC) - It's one of our biggest cancer killers. - It is a devastating disease to have. - If I had known then what I know now, there is no way I would have come home. - A game-changing drug is standard treatment across the Tasman, but not here. - We shouldn't have to be leaving our homes and going to a completely different country for us to stay alive. - Do you think blood cancer patients are dying unnecessarily because` - Oh, I don't think that. I know that. everyone knows that. (WAVES CRASH) - There are still shearers and want to be taught by him, or want to learn from him. - My hand's starting to cramp up. (LAUGHS) and Tawhai was young and fit. (LAUGHTER) But in 2019, he suddenly collapsed on the job. - So he had a week off after that, and then the following week he went back - Months of tests followed. Then, the worst possible news. - He was 29 the day that they told us that he had blood cancer. - 29. - 29. It was... soul-crushing. I had lost my mum to cancer when I was quite young. That brought back a lot of emotions from losing my mum. You automatically go to, 'He's going to die.' It's incurable, but treatable. Tawhai had extensive chemotherapy and a stem cell transplant. - He was on management medication, not very often. And regular blood tests once every three months, which was then dropped to once every six months, because he had gone into remission. - He was back shearing? - Yeah, he was back shearing. He was back doing what he loved. - Whoa! (LAUGHTER) - Tawhai and Lani have four tamariki. - LANI: Charlie's excited. and the family crossed the Tasman. - We were really looking forward to the future. But after two years in Australia, Tawhai relapsed. - It all changed again. Just one day, same thing. He collapsed on the shearing board. And I thought, 'Oh no. Here we go again.' - So they came back home to be with extended whanau. - We were told just before Christmas Day that he was not going to be alive for much longer. He was dying. There was no options left in New Zealand. He was just slowly getting worse and worse. I was just watching the person I loved more than anything slowly deteriorate and become less and less of himself. I was preparing myself to bury him and to raise my children alone. (SOMBRE MUSIC) There was no hope. - Myeloma is a blood cancer, a single cell that has mutated a number of times, and it overwhelms a system. - Dr Matt Wheeler is a physician and haematologist. - It can do a variety of different things ` invade your bones, affect your kidneys, nerve damage. It presents in a wide range of different presentations that can make it very difficult to diagnose. - And like Tawhai Reti, it can strike people in the prime of their lives. - LANI: Is it good? - Mm-hmm. - Had some really young Maori people diagnosed with often severe end-stage damage that isn't necessarily able to be corrected. - Twice as many Maori under 60 are diagnosed with myeloma. - All blood cancers, we see that Maori and Pasifika have poor outcomes and have a higher mortality associated with it. - We have higher chances of getting myeloma. We get it younger, we die faster. I feel like the severity of it isn't recognised. - There is a drug that could have helped Tawhai, but it costs hundreds of thousands of dollars a year here. In Australia, it's only $40 a week. - It really crushes you to think that money is the thing that stands in the way of saving someone's life. - Nau hoki mai ki ta tatou Hui, e aronui ana ki te mate pukupuku o te hinu iwi tangata. a blood cancer that's slowly robbed him of his health, his mahi Ko te mea nui, he rongoa kei te ao e haere ana, he oranga nui kei roto. remains out of reach for New Zealanders like him. Ruwani Perera finds out why. - There are days that feel so overwhelming. Unbearable at points. (PHONE LINE DIALS) - TAWHAI: Hello. - Hello. (LAUGHS) How are you? - Just tired. - Oh, I miss you. - Oh, I miss you. Smiling. - Yeah, I can see you smiling too. - Tawhai Reti has been in hospital since January ` not in Aotearoa, but in Sydney. and treatment not available to him at home ` fresh hope for the 36-year-old. - He was a dying man when he came, and he could have easily died. - Last December, your whanau were planning your tangi. How does it feel to be where you are today? - Ah, pretty hopeful. (LAUGHS) - Yeah. - Pretty glad I'm here, to tell you the truth. But then, I'm not, you know? - Why not? - I just miss the kids, that's all. Missing home, yeah. - It's incredibly tough for him to be away from our children. I notice a decline in his all-over health. He needs us. - Lani has had to leave her job, her home in Greymouth and her children to be with him in Sydney. - Breaking up the family, that's pretty hard. And having to go to another country to get treatment and not being able to have your family with you ` I wouldn't... (SIGHS) wish it upon anyone. - It's a ripple effect. Tawhai's sister, Krystal, has had to move across the South Island to be there for their kids. - Dealing with his pain, dealing with the demands of bringing up and providing for and nurturing four children ` I just think they're amazing. The two of them have been amazing role models, yeah. - Once a week, Tawhai receives the drug Daratumumab, or Dara, for treating his blood cancer. - There he is! Hello! - Professor Judith Trotman is a Kiwi doctor who now works in Australia. Today, she has some news to share. - And so we gave you the DT PACE, and that's wiped out the myeloma cells. Nearly wiped you out, but you are stronger, and you came back. - The daratumumab is doing its job bringing down his myeloma cell count. In myeloma patients, white blood cells multiply uncontrollably, producing abnormal proteins that can damage bones, kidneys, and the immune system. - What he's been getting is daratumumab added to the chemotherapy. - Daratumumab acts like a guided missile, helping the immune system find and destroy cancer cells. - I said to Tawhai and Lani, 'I have not uprooted you from your family, 'from your four children, to come to a different country 'just to try and buy another month or two of survival.' I see the daratumumab as a step to trying to gain long-term remission of his myeloma. - He's been starting to eat properly again today. - Oh, good. - It's transformed survival outcomes for blood cancer patients for the past 10 years. so comes with an eye-watering price tag. I thought, 'You're kidding.' (LAUGHS) When they said, you know, 'You'd have to pay for it,' I assumed maybe $10,000 a year or something like that. - Across the Tasman, it is available for as little as $40 a week. And Australians with myeloma live at least 15 months longer than those in New Zealand. - The haematologists are not being given the tools of their trade. - Bit sore? How much was that jab? (LAUGHS) - Yeah. Goodness. - Daratumumab is considered standard treatment overseas, and is also funded in almost 50 other countries. - Daratumumab is incorporated in first-line treatments across most of the OECD. New Zealand invests 0.4% of its GDP on medicines, compared to the OECD average of 1.4%, and that's where patients with blood cancers, not just patients with myeloma, are exquisitely affected. - The government have recently spent a record $604 million into the drug funding agency Pharmac. What more could they do? - 604 million, that sounds like a lot of money. But when you divvy it up across the need, how much of that is going towards treatments for blood cancer? - Before becoming Prime minister, Christopher Luxon promised to do better for Kiwi cancer sufferers. - National wants these New Zealanders to stay in New Zealand and to fight their cancer with the full support of a world-class health system. - It was a pre-election promise. and there was very little, tiny little dribs and drabs for a few, rather than really important foundational medicines for people with the second most common blood cancer in New Zealand. - LANI: How was your athletics today? - Good. But I got injured. - You got injured? - Well, I just fell. it's an economic issue. The impact on Maori and Pasifika, because it impacts them so much more often, and it impacts them at such a younger age, that has a greater economic impact. - Want to say hi to Dad? - Hi, Dad. - Hey, my boy. - Tawhai had been diagnosed at the age of 29. Now being 36, that's in his prime productive years, and because of the inadequate treatment of his myeloma, he was not working. - Talk to you soon. (KISSES) OK. - Love you. - Love you. - Love you, Mum. Love you, Dad. - Love you, mate. See yas. - Later, mate. - We're trying to not just save lives ` we're trying to get better lives and productive lives. - Oh, absolutely. - Ticked all the boxes. - He would have been a lot better six years ago. - When Tawhai and you made the decision to return back to Greymouth, back home, back to Aotearoa, - TEARFULLY: More than you can know. He could have received this treatment a lot earlier. He could be in remission at this point. - It's an absolute fact that New Zealand lives have been lost - How grateful are you to Professor Trotman? - (EXHALES) That's` Yeah. What do you do to thank somebody that's given your children back their father? Um... (EXHALES) I... owe my husband's life to Judith Trotman and the rest of her fantastic team. - You're a hero to them. - I just feel privileged to be a part of the journey, and I just hope we can see the journey to the right conclusion. - I know for a fact if we didn't come here, my husband would not be here. So as hard as it is, I couldn't be more grateful for this opportunity. - E haere tonu ana ta tatou hui e matai matua nei ki te mate pukupuku o te hinu iwi tangata. Ae rainei, ka whai whakaaro te Kawanatanga ki te tupu putea ki tenei momo whakaoranga. As Tawhai Reti battles blood cancer, better access to life-saving medications like daratumumab. about meaningful change. Ruwani Perera put their questions to the minister. - LANI: We're very, very passionate about trying to create change. I know that we're not the only family going through this sort of thing. - We know it's not been fair for a long time. I'm more interested in knowing what the government, what Pharmac, what the company who make daratumumab are gonna bring to the table, - So we've come to Parliament to meet the man who could make that change ` Minister of Health Simeon Brown. - Blood cancer is one of the most significant cancers facing thousands of patients every single year in New Zealand. I've worked incredibly hard with the blood cancer community, listening to their concerns, hearing what they have to say. - The government says it will invest $27 million into stem cell transplants, but as yet, there's no commitment to fund daratumumab. - We've put more funding in around treatment, particularly around stem cell transplants, which is a critical service which needs to be addressed. - Do you know a drug called daratumumab? - Yes, I'm aware of that drug. - It's been on Pharmac's high-priority list for five years now. - The funding uplift to Pharmac has been significant. I acknowledge that there's more work to do. There's a number of things that we're doing. We need to make sure that that makes the best improvements for our patients. - We inherited a system which doesn't even have, currently, a national wait list. We are fixing that. We're putting that in place. - But do you agree that effective modern medicines reduce the pressure on the health system overall? - Well, medicines is a key part of that. It's why we've improved funding for Pharmac. has improved the number of cancer medicines that are available. - I acknowledge that the medicines that have been funded are for Minister Seymour and I have made our expectations very clear to Pharmac about how we expect them to find efficiencies, free up resource to be able to get new medicines into the hands of New Zealanders. - Pharmac says they want to get daratumumab into Kiwi blood cancer patients' hands, but they don't have the money from you. - And our expectation is that they need to be focused on how they look at` the` how do they find efficiencies, so they can continue to invest in new medicines. We've seen them do that. - Do you know why Maori are diagnosed later and have lower survival rates than non-Maori? - Well, I think there's a real focus` our system needs to treat all New Zealanders based on need. - But do you know why there's a huge disparity, Minister? - Well, there's a` there is an issue in regards to making sure our health system - Is it fair that Australians living with myeloma live at least 15 months longer than their Kiwi counterparts? - Look, I want to see improvements for New Zealanders. That's my focus. - So there's no specific lens that you're using for a` European, Asian, all New Zealanders should be treated based on their needs. - Half of those living with blood cancer access some form of benefit support. Shouldn't they be out working, living productive, full lives? - And that's why all of these investments that we're doing are about improving outcomes for those patients. - So your message is to wait? - No, my message is we're working incredibly hard. There's a lot to do. - The government is setting up a new oversight group. - The Blood Cancer Oversight Group is all about making sure that the resources we're putting in deliver better outcomes for our patients. - One of the aims in your oversight group is that no lives are needlessly lost to blood cancer by 2035. What do you say to those battling blood cancer in 2026? - Well, there's a lot of work that needs to be done. - Is the oversight group up and running now? - It's currently being established. Terms of reference is being finalised. - So this year? - Yes. - How much did it cost to set up? making sure we've got a coordinated approach. The investment's going into additional staff. to improve outcomes for blood cancer patients in New Zealand. - That's a fantastic first step forward, and we from overseas will be watching and expecting the New Zealand health system to lift the outcomes for patients with blood cancer. (GENTLE MUSIC) - Back in Australia, there's been a massive development in Tawhai's treatment. - Probably one of the most exciting days of our life. We were told that Tawhai had been accepted to receive CAR T. Even six months ago, this just seemed like an impossible dream. That needle takes it out. - He's currently undergoing CAR T-cell therapy, where his own immune cells are genetically altered in a lab to better recognise and attack cancer cells. - There, and oh, look, there's your plasma there. - Without the daratumumab drug, Tawhai couldn't have undergone this groundbreaking treatment. - CAR T-cell therapy is a great new therapy. It doesn't cure everyone. - E te iwi, hei whakatepe i ta tatou hui, ma hea mai i tetahi waiata whakahurahura. 'Whiti Ana Te Ra' is inspired by historical reta written by kuia and kaumatua ` messages from the past that continue to speak strongly today. encouraging our people to be industrious, take action, and recognise that our strength and salvation comes from within. Na Takuta Jeremy Tatere MacLeod nga kupu a na Pereri King I titoa tenei waiata i te kaupapa o Matua Te Kupu i tu ki te marae o Waimarama. (UPBEAT, BRASSY MUSIC) (ALL CHEER) - A te tumanako ia, Whiti Ana Te Ra, ki koia koutou katoa. That is us for this week on The Hui. Until next week, e nga iwi. Kia mau ki te turanga o Taputapuatea, haumi e, hui e, taiki e. Captions by Able. www.able.co.nz Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2026 - Ko te reo te take.