- Tonight ` a genetic mutation. It's lifesaving knowledge, so why is she regretting getting tested? - Now I'm wondering if I did the right thing by finding out. - And we've all struggled with it. - Milk bottles. - Pepsi bottle. - I'm pretty weak, so I find a lot of things hard to open. (GIGGLES) - But what if what you couldn't open was crucial for your health? - It's insane, because it's not in my, sort of, makeup to let things stop me, but this one has. - She should be able to open her medication when she needs to. - Plus, we revisit the wins,... - Oh my gosh! - ...the biffo... - (BLEEP) off! - Hey, hey, hey, hey, hey! - ...and the disguises. www.able.co.nz Copyright Able 2024. - Tena koutou katoa. Welcome to the show. Now, medical advances ` they are supposed to improve our health, not be used against us. - Take genetic testing ` it provides vital information about your risk of disease. And the good news is, for some conditions, you can now use it to help prevent them. - One mum thinks this should stop. She asked Fair Go what could be done. Gill has the story. (POP MUSIC) - Young and full of dreams ` just how life for a 15-year-old should be. - I'm going to America, to a place called Sugar Bowl Academy. Uh, so it's a skiing school. - Lucy's mum is excited for her, but it's a mum's job to worry too, and she does ` she worries about Lucy trying to get health or life insurance. - I'd say it's dangerous, because they can load her with higher premiums. - They could refuse her. It's nothing to do with Lucy racing down mountains ` it's all to do with her risk of cancer. Last year, Rebekah tested positive for a BRCA gene mutation, confirming a high risk of aggressive types of breast and ovarian cancer. It's a mutation that's hereditary. - Now I'm wondering if I did the right thing by finding out. - Rebekah's doctor says she absolutely did. - Knowledge is power, so knowing that you have that mutation, uh, means that you can make decisions that can dramatically reduce your risk of developing cancer, whether that's increased screening for breast cancer or, uh, whether it's undergoing risk-reducing surgery. - It worked for Rebekah ` surgery likely saved her life, but while she had her insurance plan before getting her genetic test, for Lucy, it's the other way round. - I don't like thinking about it, yeah. - Mm-hm. But maybe one day? - One day, it might become really real for me as well, so it's a bit scary. - # I don't wanna be the same. # - There are many hereditary conditions. Stan Walker's whanau share a gastric-cancer mutation ` at least 25 relatives have died from the condition. Stan Walker had a positive test ` he's had his stomach removed to save his life. For other families, it might be mutations for heart problems, neurological conditions, with more genetic mutations discovered every year. - We now have about 7500 in the bag. - Prof Andrew Shelling is a genetic expert from Auckland University. - These are really life-changing, uh, genetic tests that can be really important for somebody's future. - We don't want any barriers to people undergoing that testing if that's needed. - And some types of insurance? - I think it is a barrier. You know, there's evidence that people will choose not to get tested because of the potential for discrimination. - While it's an issue for both life and health insurance, we focused on what our main health insurers do. UniMed is leading the way ` genetic tests aren't required. Even if supplied, related cover is still provided; some policies even pay for testing. Southern Cross does expect test results. Still, treatment cover is provided if the condition develops, but mutation-related screening cover isn't. With NIB, new applicants are required to disclose test results; cover for related treatment may be affected. And there's AIA ` again, test results are expected, and related treatment isn't covered, so in some cases, genetic discrimination. In Canada and the US, it's banned. - Anything less than that is a waste of our time. - Remember the Erin Brockovich movie, a woman taking up a cause and fighting for it? Well, take a listen to Australia's Jane Tiller. - What we are asking very strongly for is a total ban, that doesn't contain any exceptions or limits. - She's shown it can take a fight. - It's really been a long slog in Australia. - She's also shown progress can be made ` first step, 2019. - The industry did put in place, in July of 2019, what they call a moratorium. - But for Australians, it only counted if you wanted life insurance up to a certain limit. Plus... - It was self-regulated, again there's very low trust in the insurance industry, and it was uncertain, so because it's an industry policy, it can be taken away at any time ` there's no legislation underpinning that. - At least Australia is acting, but what about here? - We're behind the rest of the world, and that's unacceptable ` we need to step up. - Professor Shelling says change could be coming. - A number of us have been, uh, talking to the insurance industry, the Financial Services Council ` the body that can make that decision. - We were excited to hear what the FSC had to say, so we asked them for an interview two weeks ago, and then we asked again, and then again. Time running out, we said, 'Please, can you at least send us a statement?' So here it is. - This is a very important issue and a complex topic. The FSC and its members have been working on this for the past couple of years. We are engaging widely across the community, with many key stakeholders. - The news is that we're hopefully working towards a moratorium, with their support. - Jane's research looked at whether a moratorium was sufficient. - Long story short, the answer was no. This really wasn't a sufficient and adequate regulation ` people didn't trust it, it wasn't enforceable, it wasn't sufficient and that government legislation was required. - I can see why they call you the Erin Brockovich of insurance now. (BOTH LAUGH) - It is a passion of mine, and I will talk about it all day. - It's taken five years, but the Australian Government is close to deciding on whether to introduce a total ban. She thinks this is what should the insurance industry should work towards here. - They know that other countries deal with complete bans, and I think they know it's coming. The government is allowed to regulate, and it's time for them to do so. - Many doctors agree. - We've tried to put some pressure on, as well, so I think that there needs to be pressure, at a government level, really. - So I needed to find a political champion, and I think I have. - Yeah, hi. I'm Jan Tinetti, and I'm Labour's spokesperson for women. I'm a breast cancer survivor. I don't have the BRCA gene, but I am really passionate about ensuring that people are proactive around their health, cos I thought this is a really good issue for us to be able to talk about, and then you got in contact even before I'd had any of those conversations, and I thought this is a little bit spooky. - It is. Good spooky. It's good to speak to someone who's very clear about what they want to happen. First she checked in with her party's Women's Caucus. - I'm really prepared to take this on. - And next steps? - I can talk to the current ministers in this area and get their awareness in this space, but I can also look at is there potential a for members' bill here, that raises awareness as well? - Rebekah didn't expect change overnight, but knowing there's now momentum to achieve it ` that's a good enough win for her. - I am positive ` not just for myself, but for other women. - Especially for the one closest to her heart. So we spoke to the Minister of Commerce and Consumer Affairs, who said he is currently receiving submissions on a new insurance bill, so that's good news, because it could be another way that genetic discrimination might be addressed. - That's right. E haere ake nei, coming up ` we look back on the biffo over Fair Go's 47 years. - You are so annoying. No, no, no, no. - Plus, pesky packaging ` why do they make products so hard to open? - Oh God! (JAZZ MUSIC) (JAZZ MUSIC) - Kia ora, nau mai, hoki mai. Welcome back. Now, we have all wrestled with a jar of pasta sauce or tussled with a bottle lid. - Milk tops ` definitely milk tops for me. But what if the thing you are struggling to open is crucial to your health? - When Noeline contacted us to say she couldn't open her meds, Garth went to lend a hand and look for a solution. - We've all felt foiled. - Milk bottles. - It could be that tag that keeps the milk unspoiled. - Uh, Pepsi bottle. - Bottle of beer. - A plastic shell that you says you shall not pass. - Coffee sachets. - Coffee sachets? - Yes, yes. They are quite difficult to open if you've got arthritic fingers. - I've got a husband that does everything for me. - I'm pretty weak, so I find a lot of things hard to open. (GIGGLES) - They call it a can, but sometimes you can-not open it with that tag. - You're trying to open a can. - Like, the handle part comes off. - It just breaks. - Those are hard to open. For Noeline Holt, it's her pills. - Oh, I can't open this one. (LAUGHS) - The manufacturer changed the packaging last year. - I am getting some of them, yes, but it's the time ` it's just the time. You know, we can watch a whole programme of Fair Go while we try and get the three tablets out I need at night. - Her struggle is with a new childproof layer. That has to come off before the pill can pop out through the foil. - It rips. You can't get the ripped bit off, and you can't get the pill out. I don't want it to rule my day ` it's just something I do quickly on the side and get on with life. Why can't I? - You've been foiled. - I've been foiled, yes! (LAUGHS) - Her partner, Roman, helps. - It's 10, 15 minutes in the morning, to get six pills out. - It's all been quite a blow to Noeline's image of herself as an able-bodied person. - I'm very active ` I do tango. - Does tai chi. - I have a lovely garden. - She's a toastmaster. - I'm very social; I love theatre. - She's a justice of the peace. - And I do amazing cocktail parties. (CHUCKLES) - What is it like, if you're so capable, to have to struggle with this simple task? - Well, it's insane,... because it's not in my, sort of, makeup to let things stop me, but this one has. - She should be able to open her medication when she needs to. - She sent Roman to the pharmacist for help. - I could charge you a small amount to open each month's worth, and then... - You didn't like that suggestion? - No. Well, why should you? - She says her doctor told her to stick with these, but also struggled to open them easily himself. She called the drug company, GSK. - And this lovely woman said, 'Oh, yes, OK, yes, oh, that's a shame, but, you know, don't stop taking the meds.' And I said to her, 'Do you want to know my name, do you want to know my email address ` 'do you want to know anything?' She said, 'Oh, no, it'll be fine. 'Thank you very much.' And I sort of had a kiss off, I think. Is that what you call it? (LAUGHS) - Noeline was leaning hard on her tai chi, but the smooth and soothing circular motions are also a bit like her progress. - I've just gone round in circles about twice or three times, and so, hmm, I wrote to Fair Go. And I thought, 'Can I add Fair Go this circle, 'or will they do something about it?' - At least we make house calls. Dunno know if I'll get the hang of the first 17 moves in a hurry, but I am seeing the benefits, and so is Noeline. - It just really takes away a lot of irritations,... WHISPERS: like those pills. (LAUGHS) - But it's no laughing matter if she is skipping a dose now and then. - All of them kept saying, 'Keep taking the meds.' I'm, like, 'But I can't get them out.' - And what chance is there that a huge pharmaceutical company will change that for her? - If anybody can do it, Fair Go can. I've such confidence. (LAUGHS) No pressure. - Just as well ` basically, GSK told us, 'You'll get used to it.' - As patients become familiar with this packaging type over time, they can continue to access the medicine, whilst protecting children from accidental access. - However,... - There was not a specific incident or report of incidents that triggered this. - Rather, a global review of safety regulations ` - GSK considers that the peel-push solution is the best way. - And... - ...was tested by adults and children, to ensure it meets international standards. - Worth pointing out those standards exclude any tester aged 70 or over. How do you like that medicine? - I guess they have to have a balancing act, but this went too far, I think. - We're not beat yet, though. In a bedroom in Hamilton, someone is working on solutions. - Products that make life easier ` make life easier for all of us. - We'd asked Occupational Therapy New Zealand if they had any ideas to help Noeline. OTNZ said, 'You have to meet Kylee Black.' - I actually have a disability myself, and so I struggle to open a lot of products. - So she has created Kylee & Co. Her business is sourcing and selling assistive technology. - One of our biggest requests is how to open pill packets. - Really? - Yeah. - Kylee has more than enough worries. - If I look at my body and focus on myself, I drown, and I drown real quick, but if I cab look at what's in my hands and what I can do to help someone else, it takes my focus off myself, it gives me meaning and purpose, it makes a difference with something, and it counts for something. - Good news for Noeline ` an inventor in Nelson who has a disability also has a solution. Kylee has one left in stock. So this is the stuff that Noeline says she's struggling with. We've certainly seen her have some difficulty, and what do you reckon your gadget can do? - So what we're gonna do is... just go in and go around the outside. Now see how it's created a thing there? - Wow. How's that?! - (CHUCKLES) - And while we're here, check this out. - And then you just... And when you're at parties, you're at events, you know that your drink is safe too. Pair it with this. - BOTH: But wait ` there's more. Dying to say that my whole life. Oh wow. - So now you've got a handle, so if you struggle to hold that can or drink, now you just drink from there. - Yeah. Spin it around when you need it. - Spin it around. - And this... Oh, look at that. ...and this. - BOTH: Ooh! - The pill popper will be on its way to Noeline, no charge, leaving her to enjoy her busy life and some much-needed serenity. - How amazing is Kylie?! - Awesome. So cool. - Incredible work. Now, if you're interested in what she has to offer, we will pop her details on our Facebook page. - Amazing. E haere ake nei, coming up ` the big wins and the bloody noses. - Hey, hey, hey, hey, hey, hey! We've just been trying to do some filming here outside. (JAZZ MUSIC) - Kia ora, nau mai, hoki mai. Welcome back. Now, this week marks Fair Go's penultimate show in its current form. - So to mark the transformation, we've got the second in our series of look backs, celebrating highlights from the past 47 years. - And this week, we look at some of the wins ` both big and small. When we take on a Fair Go story, we never quite know where it will lead. We hope for a resolution; Sometimes, though, people just aren't that stoked to see us. - (BLEEP)! - Come on, Neil. We wanna talk to you about your customers. - Hey, hey, hey, hey! Hey, hey! Just been trying to do some filming here outside. - You are so annoying. No, no, no, no. Just go away. - Go away! - And sometimes we get to see exactly what our viewers have to deal with. - I suggest you send an email. - Well, I did send an email, but you didn't reply. - So you're finished? - No, after we'd finished. - Yeah, but you haven't finished. - Nah, I was unable to finish. - The materials didn't arrive again. Your truck broke down. - Yeah. - Your workers were sick again. Your son was sick. There was bad weather. - Yeah. - You were sick again. You had to babysit. You were at a birthday party. - Cool. Cool. And? - Every now and then, we get repeat offenders, like concreter Gordon Bayne. - Gordon?! - What kind of an outfit are you running, Gordon? - What are you doing with the money, Gordon? - ARCHIVE: Bayne was sentenced at Auckland's District Court to 2.5 years in prison. - But for all the slammed doors, getting hung up on or choice language,... - You are nothing but a stupid media agent! Don't play the hero, cos I'm going to spit you out, OK?! - ...it's all worth it, because fighting for the little guy has resulted in some huge wins for our viewers,... - American Home Insurance have actually given me this cheque to give you. There's a quarter of a million dollars from them. - ...big payouts that often come from lots of work behind the scenes, like Simon Mercep's stories, which saved multiple family homes, after viewers signed up to a dodgy buy-back scheme. - Thanks very much. - Thank you again. - Thank you to the lawyers and to Fair Go. - Two decades later, and Fair Go saves another home ` this time, it was Gill negotiating a several-hundred-thousand-dollar rebuild for a Dunedin family. - I cannot thank you enough for the work that you've done in getting the result. Yeah, really appreciate it. It's fantastic news, and don't feel like someone's standing on my chest any more, so it's good. It's great. - And Hannah righted a wrong after a competition to win a car really missed the mark. - And we've come to the conclusion that this is your car. - Oh my God. Oh my gosh! - That is your new Kia Sorrento. - Oh my gosh. - (CHUCKLES) - I'm shaking. - (ALL CHUCKLE) - Thank you so much. - (ALL CHUCKLE) - But it's not all about the money, like the return of a precious wedding video. - All of his and all of yours and all of this. - Yes. Oh wow. Holy cow. ` I was expecting the worst, that it had all gone. Oh, yeah. - Yeah. Cool. - Thank you. - Thank you so much. - Or a replacement for a precious school taonga. (BELL RINGS) Often, it's just someone hearing you out. - At least you're being listened to now. - Thank you so, so much, from the bottom of my heart. - But it's not just individuals that benefit ` Fair Go stories often result in changes that have an impact across the motu. - We are certain that thousands of new Toyotas left this plant with a potentially serious paint defect, and therefore perhaps an inherent rust problem. - Philip Alpers' expose of rusty Toyotas in the mid-'80s led to Toyota offering an New Zealand first ` a three-year warranty on new cars. A few decades later, Fair Go stories revealed the true scale of faulty Takata airbags in this country,... - I'd say it's quite loud. - (BOOM!) - Ooh! (CAR ALARM WHOOPS) - ...helping the industry to get more replacements and forcing the government to act. Garth's 2016 investigation into P-contamination guidelines for homes brought about a change from the Ministry Of Health and a more realistic approach from meth-clean-up companies. - What's the risk that people are gonna be exploited in this situation? - It's high. - And thanks to one of Gill's recent stories, there's better insurance for preventative surgery for women with a high risk of certain types of breast cancer. And it's not just the big things; those little sleeves keeping your ice-cream cones clean ` you've got Fair Go to thank for those too. And whilst not everyone was pleased to hear from us, no one was off limits. - You know, we're always saying to companies when they've done something wrong, 'Front up and fess up, apologise and put it right,' and it makes no difference if that company is TVNZ. - This was from a story when one of TVNZ's shows failed to make good on a competition ` in fact, TVNZ got bailed up several times by Fair Go, which might go some way to explaining why the team has such an affinity with a disguise. - We've certainly put that props cupboard to good use. - Oh yes. So many dress-ups. And we'll have more for you next week, and some of our most heartwarming moments. - Right, that's it from us. But if you only caught part of the show, you can catch all of it, plus past stories, on TVNZ+ and on YouTube. - Yes, we're on Facebook; you can email us, fairgo@tvnz.co.nz you can write to us ` PO Box 3819, Auckland 1140. - Thanks for watching, and see you next week for a special finale. - BOTH: Pomarie. Captions were made with the support of NZ On Air.