Voiceover:

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.

Julia Morahan:

Today we are discussing neuromyelitis optica spectrum disorder, or NMOSD, or NMO for short, a rare chronic condition that, while it shares some similarities with multiple sclerosis or MS, is a distinct disease with its own unique characteristics. Like MS, NMOSD affects the central nervous system, leading to symptoms such as vision changes, muscle weakness, and sensory disturbances. NMOSD is distinct in its underlying causes, and often requires tailored treatment approaches that can significantly improve the quality of life for those diagnosed.

With that in mind, the upcoming consideration by the Pharmaceutical Benefits Advisory Committee, PBAC, on a new treatment for NMOSD, known as Ravulizumab, or Ultomiris, to possibly be listed on the Pharmaceutical Benefits scheme has the potential to provide a new targeted treatment option, offering hope for enhanced health and wellbeing for those living with NMOSD.

We’re joined today by two inspiring individuals who have experienced the journey living with NMOSD, as well as a representative from the Patient Voice Initiative who will guide us through the importance of the consumer consultation process in this decision-making. Together we’ll explore what it’s like to live with NMOSD and consider some of the positive impacts that NMOSD treatment advances can bring and how this PBAC decision could mark a new chapter in the management of the condition. So Debbie, can you briefly share with us how you came to be diagnosed with NMOSD?

Debbie Leticq:

Thanks very much Julia, and thanks to yourself and to MS Australia for giving us a voice. And as a person who’s lived with NMOSD for the last 12 years, I can’t actually believe it’s 12 years now, it feels like yesterday sometimes. So at the time of my first attack, 12 years ago, I was a productive person in the community. I was 50, I was a mum of two teenagers, I was a wife, I was a volunteer firefighter, and I had a happy and very fulfilling life. So obviously when this happened, it was quite shocking and frightening at the time. The NMO attack began on my last day of a wonderful cruise, and I was feeling a little bit unwell. By the time we got back into Sydney, I had a massive right temporal headache, I guess, and in fact, it actually lasted for three months.

But then, slowly, the symptoms developed over a couple of weeks. But by the time we flew back from Sydney to Melbourne, I was very, very unwell and my husband took me straight to the hospital, and by the time I got to the hospital, my legs had already gone weak, my muscles are starting to spasm, and then increasing pain. And over the next couple of weeks, then I had other symptoms like the optic neuritis and double vision, blurred vision, color fade, all that sort of stuff. But at the time when I went to the hospital, the treatment was appalling. They actually asked me, asked my husband as I was being wheeled in, as I’m spasming and not sure of what was going on, “Is this normal for her?”, which I guess is a fair enough question in hindsight, but it was quite shocking. And they did the basic bloods and then they did a chest X-ray gave me a Valium for the muscle spasms and sent me home, and said, “Go see a GP.”

Next day, he same thing happened at the GP. My legs went on me, I really struggled with my eyesight, and then I had stuttering as well. And for a teacher that was really bad. I was not well at all. So I was referred to a neurologist. I’d had a neurological condition 10 years prior, and in hindsight, looking back, it was probably my first attacks. I probably actually had an NMOSD for 22 years, at least. Anyway, I went back to this first neurologist. He did an MRI. Nothing was found upon MRI, supposedly, and that was really disappointing because I felt like I wasn’t being believed. And he sent me and referred me to a psychiatrist. At the time, I really fought that, and yet I knew my own body, and I knew that something was seriously wrong, and I trusted my own instincts.

The psychiatrist who saw me encouraged me then to seek urgent consultation with an MS specialist who repeated the MRI and found a lesion in the C2 cervical area right up high in my spinal cord. And my neurologist at the time, 12 years ago, had one other patient with NMOSD. So he also got second, third, fourth opinions from his team, which was fantastic. Finally, I was believed, and that was a massive breakthrough for me, but it was a watch-and-wait scenario because they still couldn’t quite confirm. I was originally diagnosed with transverse myelitis. So a year later, with no preventative drugs and a let’s watch and wait scenario, I was living in limbo, with a very uncertain future.

I was finally diagnosed with NMO after experiencing another tack a year apart, which the second time affected my diaphragm muscles, and as a teacher, this was absolutely devastating. I had to go to speech therapy. I couldn’t project my voice. At the time I was teaching music. I had a choir, an orchestra, I had a family to look after. It was really hard to communicate with the kids, and I lost my singing voice and my career as a result. But at least I’d had a diagnosis, I wasn’t going crazy, and I had started on immunosuppressants to help prevent further attacks, which for me then stopped working after about two years, and then I found myself contemplating life in a wheelchair. And I went to my neurologist and I said, “Please find me another drug, because I’m not ready to do this. I’m not ready to be in a wheelchair.”

And he found another experimental drug. And fortunately for me, it’s worked ever since, and I have not had any major relapses now for 10 years. And really that was my first foray into even knowing what NMOSD was. And at the time, the Facebook support group had I think eight women in it. So up until then, there wasn’t a great deal of support. There was lots of challenges that I faced. I think the most telling one for me was living in limbo and having an unpredictable and invisible disease. That was my biggest challenge, as well as getting up-to-date information on it that wasn’t going to tell me that I was going to die like Dr. Google said. And that was quite shocking. Having an uncertain future and uncertain disease progression was frightening. Would I go blind? Would I end up in a wheelchair? Would I die?

And so I think the feelings of being utterly alone with the disease, that no one seemed to know much about it all, and no one had heard about it, including the medical profession, including neurologists, including GPs. I mean, it’s so rare. We have about 250 or 300, I think Julia, I’m not sure about the final figure. And so I ended up becoming the educator. I go to my ophthalmologist and he’s about to do a lecture the next day and he says, “Oh, you’ve got NMOSD. Can you just check over my notes for me?” And so I’m checking notes for my ophthalmologist and saying, “Yes, correct. 10 out of 10.” But the debilitating depression that followed was just… I saw my marriage fall apart. I walked away from 30 years as a teacher. I was at the peak of my career. I was a volunteer for 20 years, volunteer firefighter for 20 years. I was a lieutenant. I was driving the big red trucks. I had to walk away from everything. And so the impact was huge.

And I hit rock bottom. I couldn’t recognis e the happy, active person that I had once been. And so grieving the life I had once led and accepting where I was at was any given day was basically where I ended up. And the challenges were just all-consuming, ever-changing, emotionally, physically, spiritually. And this was only the first two years of having NMOSD, and it was frightening.

Julia Morahan:

I think we hear a lot from people about the difficulty of the uncertainty, which you touched on there, and trying to predict what a future can look like with a chronic illness, not just NMOSD, but a chronic condition that’s variable. I think that uncertainty can be incredibly difficult for people to live with. So thank you very much for that. Alex, you were diagnosed with NMOSD when you were still in high school. Can you tell us a little bit about the impact of that diagnosis at that time for you?

Alex Raleigh:

Yeah, absolutely. And thanks Debbie for sharing your story. Yeah, A diagnosis in the middle of year 12, when I’m studying for my HSC exams, it changed everything, going from worrying about how I’m structuring my essays and that being the biggest problem in my life to being paralysed, learning how to walk again, trying to, like Debbie said, make sure that I don’t end up at a wheelchair, but worrying that I will. It put a lot of things into perspective, for sure, but also gave me, I think, very different anxieties to my peers around me at the time, where a lot of us were worrying initially about our exams and how we’re going to do and university and future, and the kind of traditional way that you think of it in year 12 of what am I going to do once I get out of high school?

And yeah, it definitely put a lot more anxiety about what can I do when I get out of high school? What’s going to happen to me? Luckily I got sick between all of my exams, so before the trials and before the HSC. So luckily I was able to sit all my exams and I was fine. But yeah, I think I also did the very natural thing of Googling and there really wasn’t that much. Luckily, a little bit more than Debbie mentioned by 2019, but still not much. And still a lot of bad prognoses in the case studies and reports that I was reading about people who are permanently blind and unable to walk. And I saw a lot of the symptoms that I had had there, which kind of was really worrying. So I guess it just put a cloud of doubt and worry over everything I was doing a little bit more, but it also meant that I saw the good that the medical system can do and it made me really want to pursue medicine and that’s what I’m doing now, because of my experience in the hospital for that year.

Julia Morahan:

Congratulations. That’s the next thing that we wanted to talk to you about. So you are managing a chronic condition with your NMOSD, and pursuing a demanding career like medicine, it must be challenging. And we heard from Debbie about the impacts that NMOSD had on her career as a teacher and her life. So for our listeners, I think it might be good if you could help us understand how do you manage your health and maintain balance between, I guess, the NMOSD part of your life and all of the other things that you are pursuing at the moment.

Alex Raleigh:

I’m not sure I do a great job. I think I have times when my focus is solely on what I’m doing in my life and my academics, and then sometimes my body will give me a sign that I actually need to slow down and think about my health a little bit more. So I’m not sure that I’ve found or struck the correct balance yet. But yeah, it can be quite a struggle. But I think I’m lucky that I am in a degree that at least has some, well of course has some health literacy, and they nowadays are a lot more forgiving for people needing time off for medical reasons compared to students that, well, doctors now who I’ve spoken to who didn’t necessarily have the same freedom afforded them. But yeah, I definitely have had to take quite a bit of time off when I have my infusions or I need to have various scans and see a plethora of doctors.

But I am luckily able to live a relatively normal life. I think most of the change in my life happened in year 12 and in my gap year. And then since being in uni, I’ve also been on this novel drug and on this trial and I’ve not relapsed and I’ve not had any further symptoms, and that’s been huge. So it’s definitely something that’s always in the back of my mind and I do have to take care of my health and be very much more aware of my health and how I treat my body and how I interact in spaces much more than my peers, but I don’t have to… why I’m not particularly limited, which is pretty amazing, especially for this disease, I think.

Julia Morahan:

Yes, very amazing. I think that’s probably a good message. And Debbie, we heard a little bit before about the impact NMOSD has had on your life over the years. And I guess is there anything that you would like to share with our listeners about impact and managing that as somebody who has lived with NMOSD for quite a while, then?

Debbie Leticq:

As I touched on before, the invisibility, the disease can have a big impact on the people around you. And so often people would say, “Oh, gee, you’re looking well,” but they don’t know what’s going on inside you. They don’t know what it’s like during an actual attack. So during my second attack, my beautiful brave daughter who was 16 at the time videoed me, and I used that video to educate my family and my close friends, and all of a sudden they actually got it because it’s actually really confronting. When I have an attack, I go completely paralysed, I can’t move, I can’t speak. It’s like being trapped. I get weaker and weaker and weaker until I can’t speak or move. I can hear everything, I’m aware of everyone talking, and then I go into just massive muscle spasms, really odd looking muscle spasms with the head and repetitive movements. It’s actually really, really weird. It’s weird to me as well, but I think that to help dispel the truth about that invisibility of the disease. It is a relapsing remitting disease of the central nervous system.

So I learnt to live for today, and that was really hard. Being a teacher, you have a timetable and you have holidays, so you’re constantly just living for the next school holidays, I guess. And I learnt not to plan too far ahead. It was actually quite liberating. And the symptoms can come and go daily if not hourly, they change. I don’t know if that’s the same with you, Alex, but it’s just so unpredictable. And so I had to learn to say no, which is really difficult as a mother, a carer, a giver, a teacher, elderly parents. You are constantly give, give, give. So having to say no was really quite foreign, a new concept to me. And I was in survival mode like everyone else who first has NMOSD. So resting during the day was paramount. I had to do that, and that was foreign to me as well.

Navigating friendships and social outings, commitments with elderly parents while trying to start over was really challenging, and living with the pain. To start with, people said, NMOSD is really painful, and I thought, “Mmm, I’m having a pretty good run here.” And then bang, all of a sudden, that pain, that nerve pain absolutely hit me, and of course it affected my sleep, depression, just had a flow-on effect.” And it affects your whole family. The impact is huge. Not just your school community. I had to explain to the children I was teaching what it was like. I educated the children what to do if I became weak. I would be walking down the corridor and children would see me collapse because my legs would go on me. “Oh yeah, that’s Mrs. LC just having another one of her attacks.” And they did get used to it, but there is no doubt that NMOSD has impacted my life profoundly, and I’d not wish it on anyone. But I always say this, I have turned my grief, which probably the first two years I grieved, into growth, grief into growth, and I live with gratitude every single day.

Julia Morahan:

Just thank you for that beautiful message, Debbie. So, there is a treatment for NMOSD currently being considered by the Pharmaceutical Benefits Advisory Committee, and it will go before them in the November 2024 meeting, and the consumer process is currently open. Anne, could you tell us a little bit more about this process and what it means for consumers?

Ann Single:

Yeah, sure. And thanks Debbie and Alex. I’m really grateful for what I’ve just learned from you. To take a quick step back, when a new medicine comes to Australia, it has to go through regulation, through the Therapeutic Goods Administration, and then it can actually be marketed, they call it sold, in Australia. So that’s the first step for patients in Australia, people in Australia being able to access treatments. You might get them to a clinical trial otherwise, but that’s when they start to become more broadly available. But those treatments can be beyond the ability for most of us to pay. They can be quite expensive. And so in Australia we are really lucky. We’ve got the Pharmaceutical Benefits Scheme, and it subsidises the costs of medicines to us just as Medicare subsidises treatments to us.

And so in order for something to be available on the PBS, it has to be deemed to be good value for money or clinically and cost effective by this Pharmaceutical Benefits Advisory Committee. And what that committee does is it uses this form of policy research, which is used widely around the world, and it’s just called Health Technology Assessment. The name is meaningless, really, but just to say it’s a standardised process where it’s basically looking to see what is the clinical benefit, and do we think that’s good value for money at the price it’s being charged at?

And so the companies that bring forward the treatment will bring forward all this evidence about the benefit, and they’ll have some economic analysis there, they’ll have information about the toxicity and risks associated with these treatments. So that’s great. That all sounds really good. But when you listen to Alex and Debbie, you realise that living with a condition and having treatment or trialing different treatments is much bigger than the numbers and the sort of information that’s going to be sitting in that evidence.

And what people who do this on these committees are trying to understand is they’re trying to look at that evidence and say, “So what does that mean for people living with this condition in Australia?” And they want to think about how that’s organised. So what the opportunity in the current system is, you can make a written comment or submission online to help the committee have a better understanding of the condition, particularly when a condition’s rare. No-one on that committee may have seen anything in this area before. So they might be thinking in terms of other MS treatments they’ve seen before or people from the community they’ve met before, but they won’t have a really thorough understanding about it.

And so what we find patient communities can really help with is understanding some of the things that Debbie and Alex just set out so well. So what are the outcomes that sort of matter? Sometimes, trial data might be all about progression-free survival or something. So they’ve always got these charming names, which Alex will know well from her studies now. But what are the other outcomes that matter? Sometimes patients want to express things about fatigue or about just the ability to do small amounts of work.

So sometimes something that’s really important is that there will be something called clinical significance in the trial, and that’s very important for knowing the benefit of a drug. But there’s also that day to day, day-to-day significance. So what would be important to the community? What are people’s experiences of living with a condition and also gaining treatment, and what sort of things matter? What does daily life really look like? Is there variation in what people in the community, tiny community, I understand in this case, but is there variation in what people are currently having for treatment? Because it depends on where you live and which specialist you can access, or maybe this isn’t an issue.

But one thing I heard in Debbie’s story was about the delay and also a huge stigmatising experience in getting diagnosis. But what is that pathway to diagnosis looking like? Does it vary amongst the community? That can be really helpful for the committee to understand impacts on family and carers, wider financial considerations to be aware of for the patients and their family, side effects of treatment. There’s always side effects of treatment. What can you manage and how do you manage it, or what would you trade off for benefit? Because you know that thing before you have a condition, you might read about a side effect, and when you have a condition you might go, “No, I’m not prepared to have that.” But when you have the condition, you might also go, “Well, I could put up with that because if it gets rid of this, I would do that.”

So all of those things, which to be perfectly honest, I don’t know any of the answers for Alex or Debbie, but they will know and other people living with those conditions. So this sort of information can be really helpful for the committee to understand, and you don’t need to answer all that information. But what’s really helpful is if there’s some specific things about the condition that you know people frequently get. And we just heard, people don’t, because they only see you on your good days, so they don’t know what the rest looks like. It can be useful to share that with the committee. And the patient organisations will put in submissions usually themselves, but what I understand is sometimes individual stories can illuminate some of those summary points that the patient organisations put in.

And can I just add that what I’m thinking of as I’ve been listening to Debbie and Alex is, to me, and might just be my failing in life, but one of the ways you survive is you don’t sit your head that often in some of those hard stuff. You just keep going. And I want to just warn people listening, and this information can be really informative for a committee. It can help them better understand what they’re looking at. But I recognise and we all recognise that writing some of this stuff can take you to some of the toughest stuff in your life, and so you want to think about that before you make a consumer comment, because it might not be the right time for you to do it, and you need to protect yourself as well. So just to warn people that sometimes you’re sharing your story, it can be hard. So think about what support you have around you if you decide to do this.

Julia Morahan:

Yeah, thank you. And such important point, absolute, to make sure that you are thinking through the kinds of information that you’ll be bringing to the surface potentially, if you want to be part of the conversation around any medication. So I wanted to talk a little bit about the healthcare system more generally with everybody on the podcast today. I think we’ve talked about, with NMOSD, the rarity of the condition. So simply the recognition of NMOSD is one of the barriers that needs to be overcome. So in your views, what changes and improvements do you think would be useful for the healthcare system to better support people living with NMOSD? Debbie, I might throw it to you first.

Debbie Leticq:

I think one of the things that’s really important for any disease management is having choice. Choice, and especially people in regional areas. In my advocacy work, when I travel all around Australia and I actually go and visit people within NMOSD, there’s a common theme, lack of choice of medical and allied help, and sometimes appalling assistance, I might add as well. And perhaps a lack of information of when new medications come out and knowing what choices you have out there. I personally know of a number of people in Australia that have NMOSD that continue to relapse despite the medication that they’re on. And so they are constantly in and out of hospital, in and out of hospital. Now, there needs to be a great deal of support not just to them but to the family members as well. And I’ve heard personally from people that have got NMOSD that they worry about their family, they put their family first of course, and they need to be concentrating on their own recovery.

So I think I worry about the regional. When we’re in cities, we seem to have a lot more choice, obviously. I just don’t want to see the regional part of Australia being left behind. We have NMOSD people in every state apart from the Northern Territory now. Most of us live on the eastern states, we have people now in Tasmania and we’ve got a number in western Australia. So it would be not a one-size-fits-all. We respond differently to different treatments. And understanding that enormous cost and impact of the disease on the patient, on their families, and the strain on the medical system, we may be a small cohort, but the impact is enormous. And why should we have NMOSD be penalised for being rare or regional?

Julia Morahan:

Alex, what are your thoughts?

Alex Raleigh:

Yeah, I think I share a lot of what Debbie has said, and I guess, and I don’t know how we go about doing this, but I think awareness is a really important thing that we’ve brought up a lot of times in this recording, just because people don’t know about this disease. This is the first time I’ve ever spoken to someone with NMOSD, and I was diagnosed five years ago. And I’m working in healthcare as well. I have the disease, and if I’ve never met someone with NMOSD, it’s really likely that most healthcare providers aren’t going to have ever encountered someone with it or even encountered the disease in textbooks or anything like that. So awareness is really important, especially for healthcare practitioners.

I’m very lucky in that I was treated fast and with the standard treatment that most people are given at first. But I shouldn’t have had that privilege, I suppose. Just because I was in the catchment area of a very good tertiary hospital in Sydney, that I should not have had been… I don’t know. I find that really hard to believe that if I was in a different catchment area or somewhere else in Australia that I still might be relapsing and having all these awful symptoms that I would never want to go back to, and it’s purely just luck of the draw.

So it’s penalised for a small cohort, being rare, but also where you live is hard to take I think and hard to imagine. And also it’s important to have that awareness and that choice because even if people are well-educated on the standard treatments, from what I heard from Debbie and also from what I know is that those standard treatments of immunosuppression and steroids sometimes work for a little while and then don’t work anymore. So I relapsed while still on high-dose steroids and immunosuppression and pretty heavy-duty drugs that were meant to do the job but they didn’t quite, and that’s when I got paralysed.

And so yeah, I think making the different treatments available, I don’t know, I don’t know how, but educating healthcare practitioners on that as well is really important, because you can know that a disease exists and you can know that they’re often given steroids or they’re often given a certain treatment plan. But if as humans tend to do, we don’t fit exactly the plan, we need to be able to deal with that and not have people in regional areas relapsing all the time, which is horrible to hear.

Julia Morahan:

Yeah, and it is very difficult. I don’t think we can say, Alex, that you didn’t deserve to be treated quite, but I do understand that it is difficult to hear that people are penalised, as Debbie had said, based on where they live. So hopefully this podcast will help a little bit with an awareness and understanding. So and I’m going to go back to the Pharmaceutical Benefits Advisory Committee consultation. So I think you covered it quite beautifully before around the importance of consumer voice within this process and being able to have an opportunity to explain to the PBAC what it’s like to live with a disease beyond potentially the clinical effectiveness of a medication that’s been tested in a clinical trial. In terms of the lived experience evidence that the PBAC might be looking for when they evaluate treatments, can we talk a little bit about what kind of evidence they’re interested in seeing from people living with a disease?

Ann Single:

Yeah. So it can include a lot of those elements that I talked about before, those sorts of questions we have about daily life. One of the things perhaps I should say is when you’re looking at a treatment that’s for rare disease, there usually isn’t the same level of certainty in the evidence that comes forward, and that’s because when you do something like a trial, there’s less people who can participate in the trial. And so that means that unlike some conditions where you can have a really high level of confidence in the benefit of something based on a randomisd controlled trial, in rarer communities, and sometimes in communities where their progression is uncertain or where you have relapsing-remitting, these things can be harder to measure using clinical trials. And that’s where this context of what the condition actually is becomes very important for committees to understand so that they can understand why the data may look the way that it does.

In terms of what that can look like, the opportunity is to make written submissions within our system. And so you can go on what’s called the Office of Health Technology Assessment Hub, and you can Google that, and you can see there there’s a survey form, and it’s got just very broad areas, and you can just complete what’s of interest to you. Patient organisations sometimes collect other information. They might, for example, have access to a registry which might give some numbers that they think are quite important. They might have done some work, perhaps surveys or interviews, or they might even have a phone log of the sorts of questions they get when people ring looking for support. Other things people do, sometimes we’ve seen people even, depending on the condition, put in an example of a week’s diary to show what treatment looks like or how life has modified because of the condition or because of the treatment. And not to say you have to do all these things. I’m just throwing out all the ranges of ways people do it.

One of the things I think is really key that I’d like to say here is I think it’s fine for people to put in what they want to put in. The sentence structure doesn’t have to be perfect. If you’re not into writing too much, you don’t need to worry about it. PBAC, the Pharmaceutical Benefits Advisory Committee, they’re all about content, and sometimes people think, “Oh, we’ve got to get hundreds and thousands.” Okay, when you’ve got a rare condition straight up, that would be a disadvantage fitting of equity that we’ve got to get everyone we know to make a submission. It doesn’t run like a petition. If you want to influence government, bombard them with lots and lots of stuff. I’m not an expert on that, but I’d say that’s a good way to do it.

When you go to PBAC, one really a detailed explanation from a patient can be illuminating, so you don’t need to worry about lots and lots. So particularly for anyone listening who would like to get involved and their health is at a place where they can’t do that at the moment, to alleviate your fears, it doesn’t need lots and lots, but detail is important. And sometimes these committee members can be looking… So to go into a PBAC meeting, you might be reading a 700-page document, and the consumer members on that committee, and the unit, the consumer evidence and engagement unit that sits behind them, they can receive thousands of submissions for a meeting.

And so one of the things I always really recommend is whatever form you make it, think about the things that you think they don’t know the specific things, and even just point them to the top, because I think they’re really bright. You’ve got some really dedicated consumer members. In fact, the deputy of the committee came as a consumer member, so they want to hear you and they want to learn from you. But my thought is they have a huge amount to get through, and I don’t want them to forget the points you make. So don’t worry too much about writing an essay or having it perfect. Do think about what it is they probably don’t know that you do know.

Julia Morahan:

That’s fantastic advice. Thank you, Anne, for anyone impacted by NMOSD who might like to provide input. So as we wrap up today’s episode, I want to extend a heartfelt thank you to our guests, Debbie, Alex, and Anne, for sharing their stories, insights, and expertise with us. We’ve explored the profound impact NMOSD can have on individuals, from the challenges of managing symptoms to the importance of timely and effective treatment. We’ve also gained valuable perspectives on the critical role of patient advocacy, particularly as we look ahead to the Pharmaceutical Benefits Advisory Committee’s upcoming decision on a new treatment for NMOSD. What stands out most from our conversation today is the resilience and strength of those living with NMOSD. Whether it’s navigating a diagnosis, balancing life’s demands, or advocating for better healthcare options, the experience shared by Debbie and Alex remind us of the importance of support, both from our communities, families, friends, and healthcare systems.

As Anne highlighted, the consumer consultation process is a way for those affected by NMOSD to have their voices heard. I encourage everyone listening today to consider how they can contribute to this vital discussion. We would recommend you check out the Patient Voice Initiative Hub, where there is a 15-minute guide to equip patients to give input, most likely to end up. If you’d like more information about NMOSD or how to get involved in the consultation process, please visit the MS Australia website, where you’ll find resources and guidance on how to make your vote count. Thank you for joining us today on The Raw Nerve. We hope this conversation has provided both knowledge and encouragement for those living with NMOSD and their loved ones. Until next time, take care, and stay well. If you want more information, go to our NMOSD webpage, a link to which is in the show notes. Thank you.

Voiceover:

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.