Asbestos Still Kills

Episode 1: Living with Mesothelioma with Leonie Metcalfe

• Jason Milner / Robert McAllister / Dr. Terri-Ann Berry • Season 2025 • Episode 1

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We share Leonie’s path from lifelong nurse to mesothelioma patient. A veteran nurse who spent 52 years caring for others found herself on the other side of the hospital bed with a diagnosis she had barely heard of: mesothelioma. Leonie shares her journey five years on since she was given a six-to-twelve-month prognosis, and what it takes to have to navigate the ACC process and get recognition when the system feels stacked against you.

The science of asbestos-related disease, and the reality of treatment, advocacy, and support in New Zealand. We also spotlight the Mesothelioma Support and Asbestos Awareness (MSAA) Trust’s practical help for patients, carers, and families.

•  Mesothelioma explained, symptoms, latency, prognosis
•  Treatment options: chemo & immunotherapy
•  Navigating ACC, proving exposure outside trades
•  Gender gaps in claims and access
•  Building the MSAA Trust and support groups
•  Coffee mornings and national peer networks
•  Asbestos exposure prevention through asbestos awareness, especially       during refurbishment projects
•  Comparisons with Australia, UK, and the US.
•  Calls for a national exposure register.
•  Practical self-advocacy tips and family support

All the links for the MSAA Trust are below: the website and the Facebook page.
If you are interested in supporting the MSAA Trust, please go to the website, www.msaatrust.org.nz. If you are interested in donating, then we would love that. If you know anybody who's been impacted by asbestos-related disease or silicosis, please do connect them to us. Thank you.

Website: www.msaatrust.org.nz

Email: msaatrustnz@gmail.com

Facebook: https://www.facebook.com/msaatrust

Thank you for listening.

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More Information is available at www.asbestostillkills.com

Contact us via email at: asbestosstillkills@gmail.com

The Asbestos Still Kills ® Podcast is sponsored by:

Asbestos Management Consultants Ltd 

https://asbestosmanagementconsultants.co.nz/

The Environmental Innovation Centre 

https://www.environmental-innovation.nz/

Thank you for listening.

Don't forget to subscribe for future podcasts.

More Information is available at www.asbestostillkills.com

Contact us via email at: asbestosstillkills@gmail.com

Jason Milner:

Asbestos still kills.

Leonie Metcalfe:

When I was delivered the devastating news of having mesothelioma, it's a crazy scary disease, and it's yeah, it's a rare and aggressive um form of cancer. It's a terminal disease. Piteous, piteous disease and fatal. Because it's it's got no cure. It was devastating, absolutely devastating.

Jason Milner:

For listening to the asbestos still kills podcast, please see the disclaimer on the website www.asbestillkills.com. Thank you. Episode one. Living with me city Lioma with Leonie Metcalfe. Welcome to the very first Asbestos Still Kills podcast. My name is Jason Milner. And my name's Robert McAllister. Terry Ann Berry. So today's podcast is called Living with Misothelioma. Asbestos kills 200,000 people a year worldwide and 220 in New Zealand. In fact, it is New Zealand's biggest workplace killer. But isn't asbestos a thing of the past? Well, today we have Leonie Metcalfe. here to tell her story. Welcome Leone. And welcome to the very first Asbestos Still Kills podcast.

Leonie Metcalfe:

Thanks, Jason. Absolutely fantastic to be here. In two ways, because I'm still here with me, Mesothelioma, and also to join you and your group. So yeah, congratulations on your series of podcasts and wish you all the very best. Yep, I was certainly a very proud nurser 52 years. I trained in um Little Rural Hospital when I was 16 and a half. Um started there and I nursed there for 13 years, had a couple of years off to have a few babies, and then um absolutely loved my absolutely loved my job. Then we moved up to the um Waikato and I continued nursing there for about 39 years and was really, really involved in um the New Zealand Nurses Organization and was on national and um regional committees and sort of spent quite a bit of time down in Wellington doing some work um with pay equity and other various committees. So um yeah, life was busy, but life was bloody good. Yeah, so that was cool. And absolute, you know, when you're a nurse, it's an absolute privilege to be um involved in patients' journeys, and there's some pretty gnarly stuff going on out there, a lot of sick people, and the area I worked in actually over the um 39 years worked with little bubbers and also elderly people. So, and I've got three sisters, we're all nurses, so there were lots and lots and lots of tales to be told, but yeah, absolutely loved it, and it was such a yeah, such a privilege, I think, to um nurse these people and their families on their journeys, and a lot of those patients actually were cancer patients, and it was always my retirement plan was to be a patient advocate because you could see things sort of happening in the hospital system, lots of different doctors, lots of different ideas, and I don't think people were always sort of getting what they were entitled to, and was sort of one way that I wanted to do was carry on, be a um patient advocate, but didn't know, little did I know, that my um own retirement would be forced a little bit earlier and I would become my own patient advocate because I was the patient by then um in my own journey for fighting my life. So um when I was delivered the devastating news of having mesothelioma, something that I'd never ever heard of.

Jason Milner:

Yeah, people struggled to spell it as well, but the people had never never heard of it. Yeah. So how many years did you were you were a nurse? 52.

Leonie Metcalfe:

52 years.

Jason Milner:

Making a difference.

Leonie Metcalfe:

Yep, yeah. Absolutely loved it. Loved it.

Robert Mcallister:

So coming back to mesothelioma, I mean, what is it?

Leonie Metcalfe:

It's a um crazy, scary disease. And it's yeah, it's a rare and aggressive um form of cancer and lining of the some of the internal organs, like you've got your heart and your um lungs, abdomen, and just over time the cancer develops when uh you people inhale or ingest asbestos fibers, unbeknownst to most of the people. And those um the body can't expel the fibres or um get rid of them, they don't break down, so they actually get lodged in the soft tissue, the little soft lining of the um that surrounds the body, and and over time they cause a lot of inflammation, a lot of scarring, and they just go on to form mesothelioma. Yeah. So it's a um, and that's sort of just caused by the cell damage that sort of carries on to the mesothelioma. Mostly commonly forms around the lungs, so pleural mesothelioma or the abdomen, which is pyritoneal mesothelioma. Yep, it's a terminal disease, very poor prognosis, mainly affects men and tradespeople. And it used to be called so much the old man's disease because it was mainly tradesmen, often people who are in their 70s, getting on to 80 before they were diagnosed. So an old man's disease, it's been called a cruel, painful, unlucky, hideous, hideous disease and fatal. So yeah, it's got, and the other thing is about it, it's a you got a really, really long latency period, so that can be 15, up even up to 60 years. So it's very hard to diagnose. Um, sometimes it's misdiagnosed, and it's just just about always diagnosed in the latter stages. So um the latency period being that period of time that people sort of get misdiagnosed, and it's sort of it mimics some of the other diseases, so it's sort of quite hard to get a definitive diagnosis on it, and yeah, to pinpoint it. Yeah, to pinpoint it in. Um, so it's just got absolutely limited treatment options, and that that's not just in New Zealand, like we've um it's sort of globally, there's not a hell of a lot because it's it's got no cure. Always got to remember, too, that there's no safe amount of asbestos and absolutely nobody's um immune from it. And when you think that you're saying, Jason, there's about a hundred people um a year that would get be diagnosed with mesothelioma. We've got thousands and thousands and thousands of people working in the industry that would never go on and develop that. So the risk is pretty um pretty low, but you've always got to be just so mindful of it because as I said, just nobody's exempt. And the biggest thing I think is it's a preventable disease.

Jason Milner:

Yeah, and it's only asbestos that can cause it.

Leonie Metcalfe:

And it is caused by asbestos 99% of the time. Yeah.

Jason Milner:

Yeah. So Leonie, when and how did you contract uh mesothelioma?

Leonie Metcalfe:

That's a good question, Jason. Um I I don't I don't know. Um believe I could be exposed working in a um hospital. Um well, like a lot of old buildings in New Zealand, contaminated with asbestos. And I'm saying that my own sister and other people that were we worked at the same time at the same hospital have actually been diagnosed with asbestos as well. And when I was first given my diagnosis, they um uh that was the first thing they'd asked about was, you know, have you had been exposed to asbestos? I had no idea, absolutely no risk factors of my husband, a school teacher, no sort of family members, hadn't done major home renovations, nothing to indicate that I may have been exposed to asbestos. So, and they also said at the time, because of the latency period, I could have been maybe 20, 30 um when I got um exposed to asbestos, and that was the start of the mesothelioma process. And um I was 68 when I was diagnosed, so it was a long time, it was a long time. Yeah, yeah, almost 40 years. So yeah, I believe it was at the hospital. Um we used to take deceased bodies down to the mortuary. The mortuary had um was at the end of all these big long tunnels. We didn't have um attendance back in those days. This is back in the early 70s, 70s, sorry. Um, um so we used to push the bodies down on trolleys down to mortuary, and along the tunnels they had lots of pipes, pipes with lagging around them. Touched the pipes, all done nice and warm, and sort of went about your business. Who was I to know, you know, what risk that could have been.

Robert Mcallister:

So tell us about a little bit about your story about when you were diagnosed and what that was like for you, and also was there help out there for you?

Leonie Metcalfe:

Yeah, I I in like 2020, it sort of started off usual year for me. We'd been really busy, we'd done um quite a lot of travel the year before, we'd been to Australia, and then March we started off with um COVID. So that sort of started in March, and then I was starting to feel a bit, a little bit short of breath, getting a bit tired. I'd lost a little bit of weight, and I thought, shit, you're getting old, you know, you're getting a bit chunky. Um, and it was just an incidental visit to the GP, and she sort of didn't think things were that well, and I was actually admitted to hospital, so from the time I saw my GP until the time I was admitted to hospital, it was only about five hours. They started a barrage of tests with X-rays, and I had a CT scan, chest drain, had about four litres of fluid drained off my lung, which was obviously causing my shortness of breath. I'd also had a cough that I'd sort of seemed to have forever. And looking back now, there are pretty typical signs of you know an asbestos-related disease. Um, fortunately, when I got my own diagnosis, family was with me. So that was a really good thing that I didn't have to explain again to family and explain to um other people. So my family sort of kept in charge of keeping my family updated with what was going on, and I updated my friends and colleagues, and I think that's really, really hard as well. You've sort of been going about your business and doing this and doing that, and all of a sudden you sort of get hit by this great big whammy um business. So they did talk about um yeah, asbestos, whether I'd been in contact with it, as I said before, and said no. Um, so yeah, I I guess just it was devastating, absolutely devastating. Um, plural mesothelioma, um, no known cure, and said we can f ile an ACC claim, but it's going to be pretty hard to get the claim accepted because you have no had no known asbestos exposure. You're not a trades person, you're a nurse.

Jason Milner:

Yeah. is there a cure? Obviously, you just said before there isn't. Uh and what treatment is actually available in New Zealand?

Leonie Metcalfe:

Yeah, sadly, there is no cure. Um, treatment in New Zealand is usually chemotherapy or a combination of chemotherapy and immunotherapy or immunotherapy, and also um very, very rarely um people can have a little bit of radiation as well. That's pleural mesothelioma, and um also with the bit of radiation, that's usually just for pain management. Um, and for peritoneal, which is um mesothelioma in your tummy, they same usually the same treatment, but there's also um some other surgery that is probably it's very rare. Um, high-pex surgery, which is sort of major, major surgery, and they actually use a high um dose of hot chemotherapy, which is put into your tummy. But that's yeah, really rare. It's only performed in Hamilton and just recently in Auckland. But that's I was talking to the surgeon that does the surgery really recently, and he said in the last four years there's been um four cases that's done, so it's not common at all, and it's massively expensive. And going back to the treatment, immunotherapy is massively expensive as well, and that's um not actually covered by Pharmac. So people expected to self-fund or um have a claim through ACC. Yeah.

Robert Mcallister:

So you've been diagnosed for around five years now. Yeah. So where where's your treatment now?

Leonie Metcalfe:

Yep, hard to believe. Five years when you're sort of given a prognosis of um six to twelve months. So I think we've done pretty well. So um my own treatment I started with, I was pretty lucky because um if luck comes into it at all, but when I got my diagnosis, I didn't have a long period of time to wait before we got onto my treatment plan. Um, so it was only about four weeks, four or five weeks, and I started off with chemotherapy. Um, it was right what and the plan was for six cycles, just about killed me. I thought the bloody chemo will kill me before the mesothelioma. Felt absolutely terrible. I had had to have blood transfusions at the hospital for sepsis screening and um wasn't a good time. So when you're feeling good, you're feeling good, and when you're feeling rotten, you are feeling bloody rotten. Um, but and I had a fantastic response to that and actually went for two years without having any treatment and just had three monthly blood tests and um CT surveillance. So that was really good. And then bugger me, the mesothelioma woke up again after two years, and I started chemo again, but a different chemo drug. Um, had six cycles of that, um, still got a little bit of disease progression. So I went back and had one of the original chemo drugs because the other one had caused a bit of kidney damage, and um had that for about 18 months, and I had a couple of breaks along the way just for mental health breaks and just to regroup and do a bit of fun stuff, and I continued to get a bit of disease progression. So in February this year, I've restarted immunotherapy. I've had six doses, absolutely no side effects, so it's been really great. Um and I had my CT scan yesterday and see the oncologist next week. So fingers crossed for a good result. Yeah. So it's been it's been a long journey, and and um it's yeah, it has. It's been a long time.

Jason Milner:

I can imagine.

Leonie Metcalfe:

Yeah.

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Jason Milner:

So can you talk us through the ACC process? I know we've discussed before in regards to the ACC claims and some of the questions that they ask you in regards to the claims, they'll ask you what was the maintenance schedules, whether much refurbis re refurbishment works being taken place. You're a nurse, you're not a maintenance person. So you would have been concentrating on on the on the patients. So tell us about the ACC process.

Leonie Metcalfe:

There was a bit of a process, yeah. And you're right, Jason. It sort of my job was was nursing, it wasn't anything to do with the trades, asbestos. Um I talked before about the pipes at the little hospital I worked at, but in the second big hospital I was working at, they actually did a lot of maintenance with asbestos removal and altering this and altering that. And the patients um stayed in the wards, the nurses stayed in the wards, they had the infamous plastic sheets up. Um, nobody talked about, oh, you know, we've got sort of asbestos sort of work happening here or anything like that. So when it came to my time for putting in my claim, of course, I had nothing, I didn't know about what had happened in the rural hospital um until afterwards, sort of thinking back until shit, maybe that was what it was. Um so I was my claim was actually declined because you're a nurse and you were working in a role that you shouldn't have been expected to be exposed to asbestos, so it couldn't have happened. Um so I got a second assessment and it was the same. No, a different, a different assessor, um, same absolute hideous questions. Like, did I, if if the tradesman were there, did I wear, did I, me as a nurse, wear overalls to work? I said, no. And who who washed your clothes? You know, and and back in those days it was seen probably as the female, the mother of the house, they did the washing. Um, no, I did not wear overalls at work, and um I was looking after patients, not worrying about what the tradesmen were doing. So um I then got some legal advice, and we just kept pushing back and um challenging what they had to say. So it was, yeah, quite demoralizing, I think, and a bit of arrogance there. And so um, and it was finally accepted, and I got them to actually document that it was accepted as occupational exposure because I didn't want it just sort of sitting there and thinking, I don't know about that. Um, so my life had been absolutely, absolutely upended. And I think when you're um well I don't think I know, when you're going through treatment and people are sort of giving you silly answers and silly questions like that, it's not helpful. It's not helpful at all. And also um when I was sort of gathering my information, I'd spoken to some engineers that had worked at the hospital. Um they were the same, no, no, no, it couldn't, that couldn't happen. Um, and I mentioned that actually there had been another worker who wasn't a tradesperson who had been diagnosed with um mesothelioma, and one of the guys said, No, that wouldn't have happened because I would have known about it. And there was a second person there, and he said it's absolutely correct. He said he has been. So it was sort of the whole conversation changes. Told us open a can of worms and don't talk to this person, don't talk to that person. I um talked to a removalist at one of the hospitals, he was absolutely helpful. Um, so that was good. So we sort of gathered information, went back and looked at and thought maybe you know that's the pipes, and I think that's what it was accepted under, but I think probably reluctantly by ACC. Yeah.

Robert Mcallister:

So did that process going through with ACC, how do you think that could have been better, really, based on your experience?

Leonie Metcalfe:

Yeah, I I think there's hell of a lot of room for improvement because it's females and and also talking um to some of the other females that I'm in contact now through um mesothelioma group, that it seems to be the females that actually have a more difficult time um with that process, and also like the entitlements are due to as well. Um, I keep in contact with quite a few trades, people who have it as well, and it's never been an issue, like straightforward process. Oops, you've got mesothelioma, you worked in that area. Um, so fair enough, you know, that's probably what it is, and it will be work-related. With a female and like me, and there are some other nurses as well with Meso that, as I said before, you know, we're not in that role that were expected or going to be exposed, but hell, it's everywhere, it's it is everywhere, and as I said, nobody's exempt, and there is no safe amount. So I think there's a lot of improvement. Um the application of the law needs to be applied correctly, and mesothelioma is mesothelioma, it's covered by ACC and it should be automatically covered, and don't sort of put people through that sort of trauma of you know having to jump through hoops really to get what you're entitled to. Um yeah.

Jason Milner:

Yeah, it's people don't realise that if maintenance or refurbished works are being uh taking place within your workplace and the dust isn't controlled, then other people within the the area or the vicinity could potentially be exposed.

Leonie Metcalfe:

Yeah. Well we're gonna could've got to keep remembering though, like I'm talking about, you know, like for my own exposure then that would have been well 20, 30, 40, 40 years ago, things were a lot different to what they are now in the industry, and um we we can just move keep moving forward, I think, and making the process easier and getting everybody else on on board as well. And we've got a lot to learn, we've got a lot to learn. Can I just give a little bit of a um a shout out to Yes? Yeah, just to all the people with me, ones that have passed away, and I think mainly um also to the people caring for them because it's a a bit of a huge ask, really. It's a big thing. And you've got to be a really absolute, absolute, huge big advocate for yourself. Um yeah, and also don't look at Dr.

Jason Milner:

Google too much because that's too scary and too dangerous. Yeah. It it can snowball when you start looking at looking at Google.

Leonie Metcalfe:

Yep, yep, yep.

Jason Milner:

What support is there available for people with mesothelioma or asbestos-related diseases, and what advice could you give them?

Leonie Metcalfe:

Yeah, I think there's um when I was first diagnosed and I was told that um we didn't have a support group for um mesothelioma or any asbestos-related diseases is that so I think that's um that that was a really big thing. Um there are plenty of support groups overseas, but they're uh they're quite different. Treatment is different overseas, and like England and um America, where they have huge, huge numbers of people with asbestos-related diseases, but their treatments are quite different, and um, some of them also have individual like hospitals specific for treating mesothelioma, um, doctors that would specialise in that um treatment as well. But I I think treatment-wise, apart from the surgery that we have very little of in New Zealanders, but the chemo drugs and immunotherapy is pretty much the same. So I think we're doing okay. And I think over time um things have progressed a lot as well. You know, like with different drugs, different treatment options, there's been a few clinical trials. Nothing much comes up for New Zealanders with clinical trials, but um so yeah, my advice is be the best advocate you can for yourself. Ask ask lots and lots of questions because even oncologists say um amazing and no disrespect for any of them at all. But some they deal with a lot of cancers, and you know, there's wouldn't be that many that would sort of specialise in um mesothelioma or lung cancer. So yeah, just ask, ask and ask questions because everyone's health literacy is different as well. You know, what I might understand would be totally different to what you might understand about it, and and I guess like from being a nurse for a little while, yeah, that's 52 years, yeah, yeah. And sort of haven't been afraid to ever speak up and so yeah, just be and like have those support people, build your network up around with your support people and friends, and actually have somebody with you when you go to your appointments and keep a folder with all your bits and pieces in and keep everything together. Yeah.

Jason Milner:

I know they did clinical trials over in the Manchester hospitals, yeah. Uh because a very famous famous woman, MAVIS Nye. Yes, who set up a Mavis Nye Foundation to warn against the the dangers of a aspista she did clinical trials there as well.

Leonie Metcalfe:

Yeah, Mavis was absolutely an amazing person, and um Mavis was actually a member of our mesothelioma group, so I'd kept in contact with her, and um I think at Faman's couple of years ago we met somebody who had been in contact with her, was on her little group over there as well. So yeah, just and and other faces and the people that you remember, and she was just an absolute, absolute such an amazing person and an advocate, and she wasn't too frightened to say anything. So I know very, very sad to hear her passing.

Jason Milner:

Yeah, that before at the conference, yeah, she was talking about uh being a missile. Mavis, she was uh pretty inspirational.

Leonie Metcalfe:

Yes, absolutely. Absolutely incredible. A fabulous lady.

Robert Mcallister:

So can you tell us a little bit more about the MSAA trust, how people can help, and also how can they be contacted.

Leonie Metcalfe:

Yeah, they are the trust is absolutely amazing. And I and I think um I was put in contact with Terrien by um a lawyer, and that was I just actually started my first lot of chemo. So I was probably like a bloody startled gazelle. I think the first time I talked to Terri Ann, and I think there was a conference coming up at the end of that year, I think we did a little bit of work on, and then I actually met Terri Ann and a couple of her colleagues the following July, um, and we talked about mesothelioma and asbestos awareness and how great it would be, and I think was something that we both wanted to do was set up something, and um so we did a lot of work. There's a quite a bit of work involved in setting up a trust that we found out, and it was fantastic to have um Dr. Shannon Wallace to help us as well set up that trust, and it was finally registered as a charity the following year, so that was in 2022. So um, yeah, we've come a long way, we've had a busy year this year, done a lot of work, got a lot of work on our agenda, and I think the biggest thing is like raising that awareness um about what's happening. And we yeah, we've got a a great website now, and people can contact us through Facebook. We've got a private Facebook group just for patients in New Zealand with mesothelioma and also their carers, which has been absolutely brilliant. So we have little catch-up get-together copies, but quite a few of us or little groups of us keep in contact offline as well, which is really cool. And I think it's just that whole yeah, support with thinking, well, I'm going through this, she's going through that, he's going through that, and just sort of sharing, sharing ideas, sort of what works well if you know you've got this or what drugs sort of you have been on, and it's it's really good. And it's not all just talk about Mesothelioma, we all have families, we all have grandchildren. Um, yeah, like to do things, we travel, and so it's sort of just a like a really, really good support group. So we can be found on Facebook and also online on um msa trust.org.nz. Yeah. So the trust we've got, yeah, six board members. So we've got um a couple of asbestos related board members, which of is really fantastic. And we've got a oncologist who specializes in mesothelioma, and we've also got a barrister who it sort of helps navigate through some of the um ACC processes as well, and she's been absolutely invaluable. Yeah. Fantastic. Yeah.

Jason Milner:

All the links below uh to the MSA Trust, to the website, also to the Facebook page, uh, the links will be below.

Terri-Ann Berry:

Yep, and of course they've always got that donate button. Yeah, I mean it it's really interesting that because there hasn't been anything in New Zealand to support people with asbestos-related disease, we knew that one of the big things that we would have to do is look at outreach and trying to raise the profile. And some of that we do by physically being there, by organising meetings and get-togethers, and that way we can support people better who actually don't have somebody to talk to about their diagnosis. Um, so we that that's one of the things we do within the trust. And then to raise the profile, we do little little things behind the scenes like we've been working tirelessly to make sure that if you Google search MSAA Trust, that it actually comes straight to our website. It was much more complicated than we thought, but it works now. Um and working with um the Rare Diseases Association and also looking at providing pamphlets and leaflets that we'd like to put out in doctor surgeries and hospitals so that when you go to your doctor and you have this diagnosis, the doctor can at the same time say contact MSAA and there's somewhere for them to go. And I think that's a really important something that from discussing with Leonia has been really missing is that here's someone that can support you specifically about mesophiliona.

Jason Milner:

So they can contact the MSA Trust through through the Facebook yes, or the or the website. And you also have the coffee mornings. Tell me about the coffee mornings. I'd be myself, it's great.

Terri-Ann Berry:

So one of the things we really wanted to do was enable not just people who have an asbestos-related disease, but as Leone said, it's it's pretty hard and daunting for their carers and their families. So our coffee mornings take place all over New Zealand. Um, we set them up and we invite people to come along. It's a way to connect. The best thing in the world is when we see people swapping telephone numbers or email addresses because we know then that these people are not alone anymore. And sometimes, like the last one we had in Auckland was amazing because we had lots of children there all playing together. And I think that there's that there's that um solace in being able to be together and for people to go, I really understand what you're going through because I'm there too. And that was missing. And yes, you could look into um support lines that are in different countries, but it's not the same as physically having people there to talk to who totally get your circumstances. So we run them. They are a little bit ad hoc in that we try to do it at the same time. One of the board members is moving around the country. Um, but for the rest of the year, we're gonna have a couple more in Auckland, we'll have one in Hamilton, we've got one planned in Wellington, and we're hoping to um also have one in Christchurch um in June. So we do try and get across the country as much as we can, and it's all on our Facebook page. So we advertise when they're gonna happen in advance, and we'd love people to join us. And the coffee and cakes are on us.

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Robert Mcallister:

So on that basis though, I mean from your perspective, what can be done to prevent this terrible disease?

Leonie Metcalfe:

Yeah, I th I think for me it's just continually to raise the awareness. Raise the awareness at every opportunity and every level. You know, like if you get an opportunity like this, fantastic. Um, to speak out, we'll do that. Um but also, yeah, just to raise the awareness and talk about like the dangers of asbestos. Not everybody's going to get an asbestos-related disease, but the impact and the cost is absolutely massive to like the human cost, but also the financial cost of um people had a diagnosed with that, like the the health dollar, it's we're pretty under the pump here, so it's it's massive. Like in the drugs, because we're a small country, the drugs are really expensive. Um, so immunotherapy is huge, it is a huge cost. Um, and a lot of people can't self-fund that. So it's it makes it pretty difficult. And I think um, you know, like if you're keeping it on everybody's agenda, really, um talk about it, keep talking about it, um, keep talking about it some more, and yeah, maybe lob lobby for some tighter regulations. I I don't know. That you know, that's something that is your field, I guess, with the regulation side of it. But yeah, make it a government priority to, you know, we've got a hell of a lot of decaying old buildings, schools, hospitals around. There's a lot of work to do, and the asbestos is not going to go away for not ever ever in our lifetimes anyway. So yeah, um, and just reinstate. I'd really like to see the um asbestos exposure register reinstated. Yep. That was um just established in 2023, I think, at the very end, my work so. Yeah, and I think that's a really um um important tool that we had and needs to, yeah, in whatever form it goes, or whoever runs that that would be important. So I guess for me it's just educate, educate, educate, and educate some more.

Jason Milner:

Yeah.

Leonie Metcalfe:

Just yeah, continues on.

Jason Milner:

It'd be good for Health NZ to take over the uh exposure register, I think it'd fit in well with the doctors.

Terri-Ann Berry:

Yeah, it's it's something that we've actually talked about at MSA, um, because there are a couple of small charities that actually have a similar sort of exposure record. And so we've been in discussion about whether or not it's something MSAA can hold. Um, and that might be something we look to do in the future. But I think um Leonie's right, the education side is so important and there is a general lack of awareness, and we know that from our involvement with trade groups, um, finding out who does know that it even exists, it's still very much perceived as a problem of yesteryear. It unfortunately has a reputation of being one of the most feared substances in the world, and that doesn't help because then there's a tendency to be so frightened of it that you don't address it. And so I think a lot of our communication and one of the one of the reasons for us running the trust is not just about patient support, it's very much about awareness. And what we try to do with our awareness is to make sure that people aren't terrified and panicking about it, but they understand where exposure occurs, and we do it in a way that is calm and reassuring, and I suppose empowering people to to recognise when there might be an issue, to seek help from a professional and to protect themselves and their families, which I think at the end of the day it's what it's all about. It's easy to be terrified by this substance, but actually there are ways to manage it and manage it well, and then we're protecting ourselves but also our families for the future.

Jason Milner:

Definitely. Do you know how asbestos-related diseases are addressed in the other parts of the world? And is America better than us? Is the UK better than us in in regards to treatment and identification?

Leonie Metcalfe:

I think treatment is much the same, but Tyrion, you know, sort of a little bit about what's happening in Australia, who are quite advanced, I think, aren't they?

Terri-Ann Berry:

With the uh Yeah, they're really impressive. I mean, Australia's got 10 or more different charities that deal with asbestos-related disease, which is incredibly impressive. I understand that they're a bigger population, but nonetheless, there's lots going on. And then they have their asbestos safety and eradication agency, um, which does a huge amount of work and a huge amount around awareness and outreach. Um, again, there's lots of work that is going on in um America, in Great Britain, in Italy, just to name a few of the countries where we actually have a relationship and we share ideas and we share information about exposure pathways and also the the work of those charities and the sort of messaging they're giving out to their communities, which again is really important that that messaging is super clear and as much as it can be reassuring and proactive. Um, so I think it feels to me that we're quite a long way behind in that respect. Our charity is only a few years old, and we're the only one. Um, and we are completely voluntary and fortunately funded by some wonderful donors who have supported us all the way through. I'd just really like to give a big shout out to some of our supporters as well. We're really, really lucky with the support that we've had. Um, and there are lots of them out there, but in particular, we have um Rob Barton from ACM, um Beacon Safety Safety, and SQN. So there are others, and I'm sorry if I haven't mentioned everybody by name, but um thank you very much for your support. You know, those donations that we get through enable us to do two things. We can continue to support people impacted, but we can also continue to really spread awareness messaging and make sure that we're protecting people for the future. Um and it would be really nice if our little charity can go from strength to strength and hope to support more people and cover more of the population in the way they have in other countries like Australia.

Robert Mcallister:

So just picking up on that a little bit more, I mean, so what's your overview really on the differences in patient support level that you would get in America versus here that you know of? Obviously, you're not living in America, so you don't know exactly what that's like.

Leonie Metcalfe:

Mu much the same, I I think, um, Rob, but like in Australia, like different states also have different um support groups. So yeah, and and most of those are on um Facebook online, and we can join those groups, but a lot of people say, well, you know, the treatments are different, the the doctors are different, the drugs are different. And our group we set just for New Zealanders, so it's the only group here, so it's just purely for New Zealand patients with mesothelioma and their carers. So, but I I I think you know, at the end of the day, support support as well, and when it comes to something like having a disease that's sort of there's not much hope for, you know, there's no cure, there's nothing that it's just that having that support, and and as Terri Ann said, somebody else is going through the same as you, really, and um just keeping those little contacts. So yeah, and and and I guess like for our trust, it'd be fabulous just to watch it grow and watch it grow. Not growing because you know, hey, we've got a a lot of numbers, there's a lot of people with mesothelioma, but you know, it probably means that people are being diagnosed, people are more aware and just sort of challenging their own GPs, you know. Maybe it's you know, I've been exposed to asbestos, maybe that's what it is, you know. Um, it's again being a good advocate for yourself, I don't, yeah. But it it is just that common support and yeah.

Jason Milner:

But it's not just people with mesothelioma, but any other asbestos-related diseases as well, or is it silicosis as well?

Terri-Ann Berry:

Yeah, yeah. I mean, we're in a strange situation where we desperately want more members, but we also really don't want more members because you know we don't want more people to be suffering. But we have changed our mandate now, so we have extended um the different types of diseases we cover. So we now cover silicosis. It's a relatively new era area for us, so I'm not gonna suggest for one moment that we're we're experts, but we're we're learning and we've we're really lucky because in mentioning some of those other support groups, they are so generous with their time and their advice from other countries, and we're really lucky to have that. So, yes, silicosis is covered, and we also cover other asbestos-related diseases, which fortunately we seem to see less of at the moment, but we we do still see some asbestosis occasionally. Whether or not that's because we're not necessarily using materials made with asbestos, you know, what's in the building is already in the building, but we're not adding more. Um, maybe while we're not crooked seeing so many of the other things like pleural plaques or um asbestosis. And it might also be because the people who are suffering from those disorders either don't know about us or perhaps there's more of a reluctance to connect, which we often see. And I would say that the majority of our members are female, and that's not to sell the message that that's because more females necessarily are suffering from MSIMA, but it's just they're probably more likely to reach out. Although in Australia there is uh a definite trend towards more women being diagnosed, and and that is a concern because generally that can indicate that either it's domestic exposure or exposure in the workplace that's not related to working in an asbestos environment.

Robert Mcallister:

I mean, just expanding a little bit more on that, I suppose, from the family's position, because obviously the individual affected by it is devastating. Uh, but we've seen cases that are, you know, really progressive and they don't uh, you know, unfortunately stay with us for very long. But there's a long tail to that with their family and how the family does it. So, what are you doing as a trust in that space? Are you are you working alongside those families?

Terri-Ann Berry:

Yeah, we stay in contact. Um, you know, you quite rightly said that we have people who join us and that they're not with us for very long, unfortunately. And that's always hard. And Leone and I really struggle um because it gets harder each time. But at the same time, we do keep in contact with their families where they're willing and they'd like to. Um we maintain those relationships. And often they end up becoming amazing advocates for the trust and the work we do, and that way we can continue that messaging and that awareness. Um, yeah, and so we're not just there while the patient is around. We're we're there for the long term, we're there to continue supporting, but we invite them to our coffee mornings. Um, we still involve them in everything that we do. So yeah, it's it's not it's not just a finite amount of time, it's it's long term.

Leonie Metcalfe:

Yeah, so it's not as if you know you could pass, sorry, but you've passed away, your family's off the group. It's not like that at all. And I think a lot of our members are family members or of um people that have passed away from mesothelioma. So yeah, I think it's really, really important to keep those contacts.

Jason Milner:

Yeah. Yeah, because people will make friends, won't they? And they'll they'll keep in touch and support each other.

Leonie Metcalfe:

Yeah, yeah.

Jason Milner:

Can you tell me your favourite quote that inspires you?

Leonie Metcalfe:

I've got a couple. Um yeah, yeah. The first one is we can't always choose the music life plays for us, but we can choose how we dance to it. Yep. So you can't control what life deals for you, but you control how you respond to it. So you can sit out this waltz, or you can yeah, give it your very best and go hard on it. And that's me, because I'm not ready to be a wallflower yet, so I'm not gonna sit that one out. And the other one is yeah, having the courage to live life on your terms, yeah. So yeah, be true to yourself and do what you want to do, your choice, make your own choices, follow your own path, and and I guess don't be um pressured by the expectation of others because there's expectations, you know, you've got this, you should do this, you should do this. Well, hell no, you shouldn't do what you want to do. So that's me too.

Jason Milner:

Thank you very much. So, Leonie, thank you so much for being our very first guest on the asbestos still kills podcast. I think we've got a little prezi for you. Oh Jason, an inspirational woman.

Leonie Metcalfe:

Thank you very much indeed. Absolutely beautiful. Thank you.

Jason Milner:

You're welcome.

Leonie Metcalfe:

And it's been just so cool,. Just so good to be here and yeah, keep talking about it.

Jason Milner:

Yeah, and keep warning people about the dangers of asbestos. Yeah. And would you like to finish off just telling people about the MSAA Trust again?

Terri-Ann Berry:

Yes, absolutely. Um, so if you're interested in supporting the MSAA Trust, please go to our website, www.msaatrust, all one word.org.nz. Um, if you are interested in donating, then we would love that. There's an opportunity there to donate. There's a there's a place on the website where you can. If you're just interested in finding out what we do or you'd like to offer some time or some help, we absolutely would accept that too. And if you know anybody who's been impacted by asbestos-related disease or silicosis, please do connect them to us or reach out on their behalf and we'll connect to them because we are here to help and support. Thank you.

Jason Milner:

Thank you. Thank you so much. Thank you very much. Thank you. Goodbye. All right reserved. Thank you for listening to the asbestos still kills podcast. Presented by Robert McAllister, Famman's Director, Dr Terry Amber, the Environmental Innovation Centre, EIC, Jesse Molner, Asbestos Management Consultants Limited, AMC. For more information on the Asbestos Stillkills podcast, go to www.asbestosstillkills.com For more information on the Meteor Thelioma Support and Asbestos Awareness Trust please go to www.msatrust.org.nz Thank you.