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Standing Committee on Health, Aged Care and Sport
11/02/2019
Sleep health awareness in Australia

BIRD, Mrs Pamela, Private capacity

CHADWICK, Mrs Michelle, Director, Sleep Disorders Australia

HAMILTON, Associate Professor Garun, Royal Australasian College of Physicians

KURTH, Ms Monica, Private capacity

MOBBS, Ms Fiona, Private capacity

THOMPSON, Ms Laura, Private capacity

Evidence from Ms Kurth was taken via teleconference—

CHAIR: We'll resume proceedings of this public hearing. I think it's very important that we have the opportunity to hear from some individuals who are at the front line, if I can put it that way—in this case, people who are suffering from narcolepsy. I'll go through the formalities, which some of you may have heard before. I remind you that these are formal proceedings of the parliament and that the giving of false or misleading evidence is a serious matter. You are being recorded by Hansard, and your evidence today does attract parliamentary privilege. Thank you for the written submissions that you've provided to the committee, which are very helpful. Would you all like to make statements?

Ms Kurth : Yes.

CHAIR: Monica, would you like to go first?

Ms Kurth : Yes, thank you. Good morning. My 14-year-old daughter has diagnosed narcolepsy with cataplexy. Even though my daughter displayed symptoms for the last nine years, it took three years of persistent GP visits to gain a referral to a sleep specialist. If our GPs had asked more specific questions, taken my concerns more seriously, I believe we would have had a diagnosis and treatment earlier. Since referral, we've had excellent care at Lady Cilento Children's Hospital.

Our current management consists of dexamphetamine and Xyrem. She still naps most afternoons after school. She discontinues the stimulants on weekends and holidays, when she prefers multiple naps to manage her narcolepsy when she can. Currently we aren't treating her cataplexy. There was a discussion before about time frames of care. Once we were referred, it took us five months to see a specialist and then another six months to the MSLT and then another month to the management plan. So, in all, it was about a year from referral to treatment.

My concern about her current management is that these are serious controlled drugs, and the long-term effects have not been studied, particularly in children. Xyrem is not currently approved for use in Australia, and my concern is that this medication is not able to be accessed by the majority of narcolepsy sufferers. Once my daughter reaches 18 it will no longer be funded for her by the children's hospital. It has had a good effect on her. Her current medication is the best you can access, yet it is merely keeping her functioning. I welcome any questions. Thank you.

CHAIR: Thank you very much. Laura?

Ms Thompson : Good morning. Thank you for the opportunity to speak today. I was diagnosed with narcolepsy type 1 in February 2017 at the age of 21. Cataplexy is the symptom that differentiates narcolepsy type 1 and 2 and is also the symptom that led to my diagnosis.

Although I had always been a sleepy person, I sought medical advice when I began experiencing cataplexy attacks on the extreme side of the scale. An example of this was on New Year's Day 2018 when I was heading to the Field Day music festival with a group of friends. The night before I had stressed about how I was going to keep up with all of my friends for an all-day event into the night. As we were coming up to the entrance of the festival I started to feel wobbly while joking with friends. I had had this feeling a million times before, and it was usually a red flag to pull back from a social situation. One smart-arse comment later I felt my knees crumble from under me as I stepped off the footpath onto the grass. I collapsed hard onto the ground and my body was paralysed. I was unable to speak or even unclench my jaw enough to free my tongue that I was biting down on. I could hear a mix of worried comments from my friends and awful judgements from other festivalgoers on the footpath beside me.

Unfortunately my cataplexy is associated with positive emotions, mostly laughter, sometimes pride, anticipation or joy. Just imagine holding yourself back from the happiest moments in your life in fear that you will experience this terrifying attack. In my particular case, in addition to cataplexy, I also suffer from excessive daytime sleepiness, disturbed night sleep and sleep paralysis. Before narcolepsy I lived a very full and busy life. I did well in school, I danced six hours a week, I worked in retail on weekends and I had a really busy social life. One of the greatest challenges of living with narcolepsy is managing my own expectations. I have to plan my days around my limited wakefulness and energy, which is something I still really struggle to accept. I can't do everything I want to, and I have to choose my priorities.

Currently I'm on two medications to control the symptoms: modafinil, a slow-release stimulant to promote wakefulness, and venlafaxine, an antidepressant to control the cataplexy attacks. Although these medications have helped stabilise my narcolepsy, they're really just masking the symptom; I still don't have a restful night's sleep. So, although the stimulants assist me to go about my day, I still feel as though I'm constantly running on empty.

In Australia we're a bit behind some countries in regard to medication advances. In the USA the drug sodium oxybate or Xyrem is used. This medication targets the patient's sleep. A restful night's sleep then assists with the other symptoms. As we heard today, it's not approved by the TGA and it's really expensive for Australian patients to access. It's not something that I can afford. From what I've been told, venlafaxine and other antidepressants are also not PBS covered for treatment of cataplexy.

Education on narcolepsy is very scarce. When I received my diagnosis, my specialist did not provide me with verbal information or any reading material on the condition. This made it very hard for me to understand and accept my diagnosis. I believe that sleep specialists need to adequately inform their patients and provide them with resources such as information brochures, help guides, websites and links to support professionals and groups. Awareness is also very low. Most people don't know what it is or they only know of the narcolepsy seen in movies. Eight years is the average time between symptom onset and diagnosis. I personally ignored my signs of a problem for many years because I felt that tired was normal and that sleepiness equalled laziness. GP awareness and education could also be improved to identify symptoms and support patients already living with this condition.

CHAIR: Thank you. Mrs Bird?

Mrs Bird : I have a 16-year-old daughter, Ella, who has narcolepsy type 1. You've obviously got my submission, but I just want to tell you about our day. I probably will cry.

CHAIR: Just take your time. If you want to have a break, feel free to do that.

Mrs Bird : It's 2 am. Ella is climbing into our bed. Her dreams are so real she can feel them. She'll climb back in and fall back to sleep. She is very restless. We go on a family holiday and all collapse in the hotel lobby. Everyone looks at us and makes judgement. Every 16-year-old looks forward to getting their driver's licence. Not Ella. She is not allowed to drive. The medication she is on is not sufficient to keep her awake. She is a danger to herself and to others. We ask ourselves questions on a daily basis. Do we let her catch a bus? Will she fall asleep? Will she get off at the wrong stop? Will her friends understand? All her friends grow irritated with her because she can't do what they do. Will her employer be accommodating?

Before this happened, in 2015 Ella caught two bouts of flu back to back. We believe that was the trigger. Prior to that she was playing soccer for Tasmania, with the dream of being a Matilda. She can barely take the field because the cataplexy sets in as soon as she starts chasing down the ball. We know that Ella can do anything she wants. She is the most amazing, determined and strong child. At the end of the day, her limitations are only in her head. Imagine living your life void of emotion so as to limit the impact this disease has on you. Imagine feeling like you've been awake for 48 hours-plus every day. Imagine the medication that you take increases your heart rate, makes you lose significant amounts of weight, dulls your senses and yet still doesn't allow you to do what you want to do. Imagine seeing your bright, bubbly child become a hollow shell. Imagine being 16 and wanting nothing more than being normal.

CHAIR: Thank you. Mrs Chadwick?

Mrs Chadwick : I was 11 when the symptoms of idiopathic hypersomnia first appeared or that I can remember appeared. It took 20 years before I was diagnosed. I went to dozens of doctors and was referred to numerous specialists, but never once to a sleep specialist. It didn't matter how I framed the discussion with the doctors or how I explained what the symptoms were or how I was feeling, it never occurred to them to refer me to a sleep specialist. I can assure you that one of the very first things anyone with idiopathic hypersomnia or narcolepsy will tell a doctor is, 'I'm tired all the time,' or, 'I'm sleepy.' Even if they say, 'I'm fatigued all the time,' or use the words 'exhaustion' or 'fatigue', surely there must be some sort thought in a GP's mind that it could be a sleep disorder, but often there's not. As I said, I went 20 years before I was diagnosed. That only happened because I moved to another state and had the good fortune of being referred to a sleep specialist who does have experience and is trained in disorders of hypersomnolence and narcolepsy. I've come to learn that they're rare.

Just after my diagnosis, despite having a good specialist, I came away with very little information. I realised that I wasn't alone. A lot of people, regardless of how good their sleep specialist was or how inadequate they may have been, seem to come away with very little information, nowhere to go and no support, so I started Hypersomnolence Australia. I founded the first not-for-profit organisation in the world dedicated to idiopathic hypersomnia. I'm just inundated. My job is full time. I'm inundated with people who have lived my life of decades of going without a diagnosis and then, at the other end of the spectrum, the children who are experiencing symptoms. Whether they're diagnosed or not, they're still struggling.

There isn't a lot of support out there. What support services are available are voluntary. They're not funded. Hypersomnolence Australia doesn't charge any membership fees. I do it for free or I fund it myself—or my husband does, and he doesn't particularly know about it either. Getting support from even family and friends is difficult. I guess I'm lucky that I have a husband who understands the amount of time and money that we put into it. I don't particularly think that he actually understands the condition. That is something not just the general public needs to understand and doctors need to learn but our loved ones need to understand. I don't think they're going to understand until the broader public understands.

CHAIR: Thank you very much. Ms Mobbs, are you okay to go?

Ms Mobbs : I'm all right.

CHAIR: We can take a break and start some questions, if that helps.

Ms Mobbs : No. I feel like I'm on the outer sometimes because my diagnosis came really late in life. I sincerely feel for the younger ones, the children, because at least I've lived some of my life. My diagnosis only came in 2017, when I was 47. You have most of my background. Prior to that I just put my sleepiness down to the fact that I had been a single parent for the last 16 years. Things progressed to where I would fall asleep at work at my desk and in meetings. Even just having a coffee with friends I would just zone out and want to sleep. In about October 2016 I had my first what I know now to be a cataplexy episode. I continued to have those over the next few months in public malls and at shopping centres—anywhere and everywhere. If someone is behind me when I'm having one of those, it would just look like I'm drunk. It's extremely embarrassing. You just want to go somewhere where no-one can see what's happening. I had multiple trips in ambulances to the hospitals, and because I was then already out of the episode I would just basically be monitored and then told to go home. In January 2017, I spent a week in the Royal Brisbane after this had been going on for months and I saw every specialist under the sun in there. They just came in and—anyway, I was referred to have a sleep study after that, which is when it all came about, the diagnosis. But again, the problem is they give you a diagnosis and they try you on drugs but they don't tell you all the symptoms that can come with it. There's no warning, there's no support. I understand public hospitals are limited in resources and time—again, they need to get through their patients—but I'm a person. I have the verbal hallucinations and they're God-awful. You think somebody's in your house, you hear things, and it's just—people think you're crazy.

My workplace was extremely unsupportive. I had to resign from my job last year in May. I prided myself on raising my kids not relying on Centrelink or single parents pension, and I worked my arse off to build myself up into a better career place, not because it was a job I particularly wanted to do but because I wanted to give my children opportunities. I didn't get child support. Their father just chose not to be in the picture. And so, at a time when I was finally in a place to earn good money, and to really feel what I felt was comfortable, I'm now at 48 not working, probably I'm looking at a future of never being able to work—unless they want to pay me to test mattresses or something like that; I'd be pretty good at that!

This condition is not a one-size-fits-all, and this is one of the biggest things we need these health professionals to understand, especially our sleep specialists. We all have different triggers. Mine are quite different again. I can have days where I can't even get out of bed. I've lost friends who I thought were really close friends. I've been ridiculed. I've been told I'm faking it. And sure, I'm just living at home in my bedroom—you don't want to get out, you just—socialising is not worth it because, more often than not, I'm going to have an episode. I can't help it. And that's the other thing: because there's no understanding of this condition—and I appreciate that people's lack of knowledge often leads to ignorance—and so people need to know that, while narcolepsy is a sleep disorder, the cataplexy is a symptom of narcolepsy. If we have an episode, we're not asleep. We have no control over what is happening to us, but we can hear everything that goes on around us and they think we can't—and some of those comments are downright cruel. It's one of the reasons I'm here from Brisbane. I've funded my own air flights because it's important for me that I sit face-to-face with you, to see that this is an extremely urgent and important matter that needs to be addressed.

I heard one of the ladies say that maybe nurses or other allied health professionals can take on certain roles, and possibly for some sleep disorders they can. I don't believe so for narcolepsy. My specialists, as it is, tell me that I'm a very complex case and that there's nothing more they can do for me. I believe that it has to have its own specialist. Don't go and add another burden onto already stressed out nurses and ask them to do more training and education when they're already feeling stressed to the max. I just think it needs to be a whole category of its own. I'm sorry, because I know this is supposed to be a really brief introduction.

CHAIR: No, take your time.

Ms Mobbs : But the big thing I wanted to say it that, basically, this is my life now. Whether I can ever go back to some sort of employment? God, I'd love to. I want to challenge my brain again, but right now it gets foggy. Some days I can't even string sentences together, so I probably sound like I'm a moron. Other times I'm okay. It's why we want this drug to be approved on the PBS—this Xyrem. I'm also on the armodafinil and the Effexor, which does nothing for me. It's probable that it might have cut down my cataplexy to a certain degree, but that's because I avoid things. I was having up to three or four episodes a day, and each of my episodes last between half an hour and 40 minutes. I've had to pull into streets and just lock my doors and put my seat back in the car because I know that I'm going to have one. I've sat on stairs in the city walking to work because I know I'm going to have one. But you still just keep pushing yourself because there's nothing else. What else do you do?

The thing is there's so much roll-on from these things, when we feel like we're alone and we're not listened to and there's depression, and that's real and it's also really serious because you can get to that point in life where you feel you have no life anymore and there's no future for you. You end up in the biggest, darkest hole, because, even though we have Facebook pages and we know other people, we're not near each other all the time; we're on our own with this.

But there are key things, I suppose, for me, and I want to put them in an acronym, which is in the word 'NAP', because that's one of the key things that they tell us to use to manage it. The 'N' is basically for 'narcolepsy', and it's just a constant state of sleepiness. We never feel fully charged or refreshed. It doesn't matter how often or how long we sleep for. There are not enough support or treatment options. 'A': 'awareness and education'—campaigns, TV ads, brochures, posters. Heck, I'm sure we're all willing to put our hands up and sit and speak to people and tell them how it really is. 'P': 'paralysed', because every time I have an episode I feel paralysed. I'm trapped in my body, and it's scary and it's awful. Sleep paralysis—the anxiety and panic attacks that are associated with it; the fear of being in public in case we have an episode, due to a lack of knowledge about the disorder. So we're seen as intoxicated, drunk, lazy—lazy's a big one. We're not lazy; we're people, who want to do a lot, trapped inside bodies that can't. I so appreciate that this is happening today, as I'm sure a lot of us are, because you're giving us a voice. It' tells it like it is, because a lot of our sleep specialists, as we heard, have very limited training in these areas. They go on what they know or hear or see, but our disorder goes way beyond those small little parallel rounds. When we try and mention other things that are happening, we're dismissed. They say, 'That couldn't be happening.' My sleep specialist said to me: 'Why are you not back at work? Why are you still tired?' You're the sleep specialist; you tell me. I don't know. I can't control it.

CHAIR: Thank you for being such a powerful voice. We might dispense with formalities, if that's okay. I might use first names, if that's okay. Laura, how is your medication working? Is it keeping it under control?

Ms Thompson : Yes. My cataplexy is mostly under control, but if I was to miss a tablet for some reason it's bad. The modafinil works to an extent. I can get through a day at work, but I fear that it won't work forever and that I'll get used to it. I'm on the highest dose at the moment. I hope I have a long life ahead of me, and I'm a bit worried that the modafinil won't always meet my needs.

CHAIR: So it is possible to develop a tolerance over time?

Ms Thompson : I believe so, yes. That would be a bit scary if that happened. At the moment it's manageable, but it's not a solution. I still feel tired a lot.

CHAIR: Pamela, is medication for your daughter, and Michelle, is medication for you, helpful?

Mrs Chadwick : I don't like to use the word 'works', because 'works,' for me, would be that I'm normal. How I feel couldn't be normal. I don't know what normal is. I don't remember back before I was 11, but I'm pretty sure how I feel isn't how you feel. That's based on the fact that I sleep excessively. I know that my sleep is good quality. I've had plenty of sleep studies and they show that I sleep very well. In fact, they show that I probably sleep deeper than most people do, but I still wake up feeling like I've had no sleep at all. Medication doesn't change that, because medication doesn't target the cause.

What medication does for me is help me to wake up in the morning. It helps me to get a few hours in where I can get some real work done, rather than housework, which I might be able to do in a sleepy haze, but then after a few hours I have to nap; I have to sleep. I have no choice, which is what makes normal employment difficult. I'm able to do what I do because I do it from home. I have the flexibility of being able to do that, but I'm also not paid. I'm not in a paid position. That's basically it.

When it comes to medication for me, it's not got me back into the workforce. It's not got me living a normal life. It helps me wake up and gives me a few hours where I'm able to do my advocacy, to raise awareness and to listen to numerous people who are feeling the same way I do. I think part of the reason that I cried was I'm tired of being tired. I'm tired of sleeping my life away, but, if I'm honest, I'm tired of hearing people say the same thing. I'm really tired of that, because I do that full time. I hear from people who feel the same way I do every single day. I'm not free of it. Part of the reason that it's such a burden for me is, as I've said, we don't have any funding to offer support for any sleep disorders—any—none—there is none.

People with sleep apnoea don't have support. They look to organisations like Sleep Disorders Australia, Narcolepsy Australia or Hypersomnolence Australia, and they expect the world. I don't blame them, because I would have been once too. But there's only so much we can do. Without support from somewhere, I'm not so sure that we can continue. It's not feasible. In fact, in Sleep Disorders Australia the board of directors are ageing. A lot of them on the board started it 20 years ago. And we are finding it difficult to find replacements for them because it's hard work and it takes a lot of your time. Without funding I'm not so sure that we'll be able to continue. Medication doesn't do a lot for me, but I pushed myself regardless because, as everybody here will say, we want a life, we want to be a part of society, we want to be a part of the workforce and we want to contribute to society. But without support, better medication and better access to medications it's not going to happen.

Mrs Bird : From our point of view, the medications helped to a degree. Ella's on antidepressants for her cataplexy, and that has reduced it from 30 to 40 episodes a day to six. If she doesn't take it, she's terrible. She's on a long-acting amphetamine and a short-acting amphetamine as well, which reduced her weight to a point where she was hospitalised. I don't know enough research about the long-term effects of any medications. As a mother, that's what scares me most. Obviously, when your heart rate's going flat out, the heart only has a certain life span if you're speeding it up. What's the effect of all this medication that we're giving our kids? None of my specialists have been able to say to me, 'Pam, this is how it's going to roll.' Not one of them. So whilst it does work a little, she still sleeps through school, she still sleeps through exams, she naps in the car on the way to school, she naps in the car on the way home. She will nap when we get home. She will nap after tea. She will not nap at school as a scheduled nap, because that's just not cool and she doesn't want to do that. But that's something she's got to learn. She goes, 'No way. I'm not going for a sleep in the nurse's office. I'll just sleep through science.' So for us medication is a bit of a mixed bag. I would like to know more about the long-term effects of how this affects our kids.

CHAIR: Have any of you had any experience with Xyrem, or do you know how effective that is?

Ms Mobbs : I think we were all at a conference in Sydney last October, where four of our narcolepsy peers, let's call them, were on a panel. All of these people were on Xyrem and had been for some time. They are lucky enough to have grandparents who were funding them. The difference, listening to them, one was able to complete a medical degree and is now going to do a thesis on narcolepsy. Another one was able to go back to working full time. Even just listening to their stories, it's like, 'Wow—I can't even fathom that.' I'm not sure about these ladies, but I did sign up while we were there. They're doing a trial at the moment for a new formula of Xyrem. At the moment Xyrem is a twice-a-night medication. They're trialling a new formula of it where it will just be once a night. I'm heading to Melbourne next week on my first visit with regard to getting on that trial. But even these things come at a cost to us. For me it could be an extremely physical cost, because of the vaccine. The vaccine is a drug that is not very liked by a lot of narcolepts because of the withdrawal symptoms. They liken it almost to coming off heroin. The dosage I'm on seems to be quite high. I started off low but when I—and I hardly call myself a runner anymore because I struggle—started back running, even though my cataplexy episodes had been somewhat controlled, because I was exerting myself again, they were getting worse again. So, my sleep specialist's answer to that was just to keep increasing my dosage.

The sleep physician who's in charge of this clinical trial in Melbourne spoke to me, because I think they were a little bit concerned about the high dosage. I'm expected to come completely off that drug in a three-week period. There's no guarantee I'll be given the drug; I could get a placebo. I need to be prepared to go through those God-awful withdrawal effects, which could include brain zaps for me. The worst case scenario is that I end up in a case of status cataplecticus, which is a permanent state of cataplexy, and go to hospital and would probably get put back on meds all over again.

But, if we don't put ourselves out there and try this—and I don't have a life anymore with this. I can be at home. My kids aren't small anymore—they're 19 and 22. They're used to me being a strong mum, and my son's almost too scared to be around me and cries because he doesn't know what to do. I'm prepared to do pretty much anything, and that's why I try to raise as much awareness as I can. I even started a running page. I don't care if people get sick of me talking about it. Again, I have lost friends because of it, but people need to understand that we're not lazy. This is a genuine condition and it's serious, and we don't like being like this.

Ms Kurth : My daughter's been on Xyrem for six months. When she had her testing done, her sleep rate was 48 seconds. So, she goes to sleep extremely quickly and straight into REM—all five sessions were REM. The other interesting thing about her is that, over the week prior to that testing, she was monitored. She's waking on average 54 times a night, which is roughly every 10 minutes.

Initially, we started on the dextroamphetamine to keep her awake through school. That has been effective. We're watching her weight though because just now her weight has just dropped below her height on the percentile chart, so that's an issue. What Pamela was saying before: the weight loss is a real concern. So, I'm not quite sure what we're going to do if her weight continues to drop.

We went on Xyrem about six months ago, and it's a difficult drug to go on initially because there are so many side effects. It's a full-on medication. Again, I think we've been quite lucky in that the side effects that she suffered were reasonably minor. We managed those fairly well. We had to dose her up incredibly slowly. She is now on three grams twice a night, which again is a guesstimate. There is no actual dosing for children. Nothing has been tested on children, so it's all just trial and error.

In terms of how she's gone on the Xyrem, because her waking bouts were so high, the decision was to trial her on the Xyrem because it was shown to be effective in proving that. I think it has as I find she does wake up quite well and her best hours are probably the first three hours of the morning. As soon as she gets up though with breakfast, she has her dextroamphetamine but that is her best time of the day. As the day progresses, her sleepiness increases. Even though she's on the highest level of dextroamphetamine for her weight, by the time she's home from school, she has to nap. So, she's still napping every day even though she's on the highest and the best medication she can possibly be on. There's not a lot more we can do for her in terms of medicating her. We've chosen not to treat her cataplexy, not to put her on an antidepressant. Her cataplexy is reasonably mild, so she can manage that. But there may be a time when we will need to add a third medication to her mix. We're trying to keep it as simple as we can.

But with Xyrem, again, I hear from a lot of people on the forum how it does change people's lives. I don't believe it's been the magic pill for my daughter. It certainly hasn't changed her that dramatically, but it has most definitely made a real impact upon her. Since she's been on the trial, there was one night when she didn't take it. We chose not to give it to her that night because she'd been vomiting and had been quite dehydrated, and Xyrem is not so great when you're dehydrated, because of its high salt content. In the morning, she said she just could not believe the difference between the sleep that she has with Xyrem and that night without it. She was awake constantly. So it is such an important drug for people to have access to.

Mr GEORGANAS: I'd be really interested to know, individually, what out-of-pocket costs are involved for you because of having this issue.

Ms Thompson : For me, the tests that you have to have—overnight and then all day the next day, with scheduled naps—I think that was about $400, and I didn't receive a rebate on it. And then medication per month is about $65.

Mr GEORGANAS: So around $400 per week plus $65?

Ms Thompson : The $400 for the initial test to get diagnosed, and then $65 per month for medication. That's for the armodafinil and venlafaxine.

Mrs Bird : We don't have private health insurance, but we go to a private specialist in Melbourne—we have to fly to Melbourne every three months and pay for our accommodation—because there's no paediatric sleep specialist in Hobart. We are lucky that our paediatrician through the royal has helped us get our medication, which we take through the royal. That's lowered the costs, but we're still probably looking at about $120 or $130 a month on medication, and then there's doctor's visits and flights in and out of Hobart.

Mrs Chadwick : My sleep specialist isn't cheap, but he's probably better than most. So there is that expense. I'm fortunate though—after having finally been diagnosed, I don't have to see him that often. However, in different states you have to see a specialist to have access to medication. That's obviously unfair, particularly when it's not uniform. Different states have different rules about how you can access your medication, so the cost of getting medication for me might be different than for someone else and so on. That's an issue in itself. And then I have monthly medication costs, which are similar to what has been said.

There is also the fact that some GPs don't bulk-bill. My GP moved and, after years of seeing the same person, I got a new one. I was shocked to find that this new one had charged me a double visit because it required them to pick up the phone and get an authority for my script. I nearly fell over! There was absolutely no way I was paying it. They didn't even take my blood pressure or anything. They just pick up the phone and got an authority for my script, and that in their eyes justified a double visit, over $100. I now find out that's not uncommon; other people experience the same thing.

Mr GEORGANAS: Did you end up paying for the double visit?

Mrs Chadwick : I didn't pay it. But I've found that it happens to other people too. So now I'm in the process of having to try and find another GP who will not only not do that but who will take on a patient that has a restricted medication. That is an issue. I've now found that I'm not alone with that either.

Mr GEORGANAS: So it's hard to access a doctor as well with this restriction?

Mrs Chadwick : Because of the new government laws and rules about monitoring the prescriptions for restricted medications, a lot of GPs just won't take on a patient who has restricted medications.

Mr GEORGANAS: Is that because it's just too much work for them?

Mrs Chadwick : No. Apparently, from what I'm told, it's because they don't want to become a red flag. They don't want to be the doctor that prescribes the restricted medication. It probably sounds better if I say they don't want to be the doctor that prescribes amphetamines. That's been the case. There are five GPs in my local doctors' surgery, and none of them will take me on. As my medication dwindles until there's none left, I'm now running about trying to find a GP who will take me on. It's unusual, considering I had no problem for years and now I've got this problem. That's another thing that I've learnt. My experience is not uncommon. Because it's not uniform throughout Australia about how you access medications, there are variations to my situation, but nothing is simple. It's not a matter of: you get your diagnosis, you get your medication and you go away and everything is fine. You're just never left alone. There's always something that comes up. There's always: 'You've got to come in and do another test because there are new licensing laws.' While all of it may be valid, there is a lack of information. People don't know. Their doctors might not always tell them. That's another issue. I get people saying to me: 'My doctor didn't tell me that I had to tell the driving authority that I have a sleep disorder. Do I? Does that mean that my insurance won't be covered?' It is actually, again, quite common that doctors don't communicate that information with people. So a lack of information and uniformity among GPs and sleep specialists around Australia is a big problem, and it impacts sleep disorders in general, but particularly narcolepsy and idiopathic hypersomnia, because the prescription medication for them is usually restricted medication, and then that becomes a big issue.

Mr GEORGANAS: Fiona?

Ms Mobbs : I see my specialist at a public hospital, and I probably spend about the same amount as Laura on my medication, about $65 a month.

Dr FREELANDER: Thank you very much, all of you, for coming along today. I think your evidence has been incredibly powerful. I thank you for that. I'm sorry you've been upset, but what you've told us has been incredibly moving and incredibly powerful, so thank you. I'm keen to see how we can do this better, but I'd just like to ask Monica, if I can, to take us back through the pathway you've been through. You said that you had difficulties with the initial diagnosis with your general practitioner. What sort of explanation did you give to your GP about your daughter's symptoms?

Ms Kurth : I was basically saying that she had excessive daytime sleepiness. At that stage, we were unaware of her cataplexy. It wasn't until later on, when I was talking to her about narcolepsy and cataplexy, that she said, 'Oh yes, I've got that.' So we weren't aware of that for a long time. It was just her excessive daytime sleepiness, from the age of five, that had presented. Certainly, by the time she was 10, every day in school she was sleeping.

Dr FREELANDER: You found that even at age 10 she was sleeping at school?

Ms Kurth : Every day, yes.

Dr FREELANDER: What was the response of your GP to that?

Ms Kurth : I've been seeing GPs for quite a while. You've got my submission there, and 3(a) lists a whole heap of things that I was told, like she might be anaemic; she might just be active; it might be anxiety or avoidance; she might be hormonal, growing up; it might be behavioural, diet related or related to too much screen time; she might be being deceptive, pretending to go to sleep; it might be viral; it'll pass in time. There were all these flippant comments. We'd had blood tests. They were all normal, and she was generally a healthy, happy kid, so doctors just weren't concerned, even though I was saying, 'It's a problem.' It was still seen as: 'It's just that kids don't sleep well, these issues.' No-one was taking me seriously. It was only through my own research that I came across narcolepsy, and that's when I really started pushing and saying, 'No, I believe she has this.'

Dr FREELANDER: So you and she asked whether this could be narcolepsy?

Ms Kurth : Yes, and I pushed because I was convinced. When I found out about narcolepsy and cataplexy, I was talking to my daughter, saying, 'There's this thing called cataplexy where people lose their muscle tone. Have you ever felt floppy?' and she said, 'All the time when I laugh.' I thought, 'Oh my God.' She said, 'I just thought that was normal.' Kids don't know what is normal. They don't know or say, 'This is an unusual thing that's happening to me.'

Dr FREELANDER: Were you offered a referral to a paediatrician first?

Ms Kurth : Yes, I saw a paediatrician. I have to admit, though, it was even worse than what happened at my GP. They really just wanted to blame it on behavioural issues and my parenting. I really had no joy with GPs and particularly that paediatrician. It was only really through my persistence and my research that I was convinced.

Dr FREELANDER: And you asked for a referral to a sleep physician?

Ms Kurth : Exactly—yes.

Dr FREELANDER: When you saw the sleep physician, did he or she bring up the possibility of narcolepsy?

Ms Kurth : Yes. At the initial consultation with the specialist, we had a great session where lots of very specific questions were asked and we went through lots of different things. It was even after that one that they suspected narcolepsy, and the test 100 per cent confirmed it.

Dr FREELANDER: But it still took some months to get a sleep study?

Ms Kurth : And that was just for the waiting list at the hospital. Since the referral from the doctor, we waited five months to get the appointment with the specialist and then, from the recommendation from the specialist, it took another six months to get the testing done.

Dr FREELANDER: So, even though you suggested the diagnosis of narcolepsy, it still took a year to get it confirmed?

Ms Kurth : Yes.

Dr FREELANDER: How do you feel you've been supported since that diagnosis?

Ms Kurth : Tremendously. Lady Cilento Children's Hospital has been magnificent. We've got a great specialist. Also, because my daughter's waking bouts were so long—she's a bit of an unusual case—there was quite a lot of interest in her. We've been supported quite well.

Dr FREELANDER: Good.

Ms Kurth : It's limited. Obviously it's support in terms of her management. I found a lot of support on the Xyrem forums because of the amount of real information there. Clinically, the information you get with Xyrem is not complete. You've got lived experience from a lot of people. The majority of the people are in America. It's just not available here in Australia. If that's the one thing that comes out of this inquiry—

Dr FREELANDER: Yes—good. Could I ask the other ladies: have you been supported financially in any way? Is there the disability support pension?

Ms Mobbs : It's not seen as a disability. We're talking about different things with transport and licence. I don't think things are consistent either with this as a disability, because we talk to some people in other states and they've been on a disability pension for ages and other people say, 'We tried and they don't see it as a disability.'

Dr FREELANDER: So none of you have been given the disability support pension?

Mrs Bird : No.

Dr FREELANDER: What about for your daughters, for example?

Mrs Bird : No. Someone said to me the other day that she should apply for a healthcare card, but—

Unidentified speaker: That's a nightmare.

Mrs Bird : I don't feel the need for that at this point, but that's not to say that things won't change. She might need that support at some point, but, once again, it's not recognises a disability. Narcolepsy itself is not recognised through that system, so I don't know that she could get the support if we needed it.

Dr FREELANDER: A healthcare card would help pay for medication or would reduce the cost of medication.

Mrs Bird : As I said, our hospital helps us fund that, and we spend so much on medication that I usually reach my safety net.

Dr FREELANDER: Laura, do you get any financial support at all?

Ms Thompson : No.

Dr FREELANDER: What about NDIS funding? Have any of you applied for that?

Ms Thompson : I haven't—no.

Unidentified speaker: We're not eligible for it.

CHAIR: It's not recognised.

Dr FREELANDER: But you could make a case.

Ms Kurth : Through the forums and things people have talked about it and people being knocked back. I think that discourages anyone else from applying for it because they feel that they are going to get knocked back.

Ms Mobbs : Maybe the recent charges have cut it back even further. To be honest, sometimes I don't feel mentally strong enough to deal with some of these things and all of the paperwork that's involved. I'd rather just go, 'Well, my house doesn't get cleaned for a couple of days; so be it,' or I don't get whatever it might be that they can help with. Sometimes you just turn around and go, 'It's too hard.'

Mrs Chadwick : From my experience with dealing with people with disorders of narcolepsy and hypersomnia, I would say that most who are on a disability pension have other disorders. They don't just have narcolepsy or IH; they have other disorders, and it is that that has probably got them the support. In fact, I don't know of somebody who just has narcolepsy who is receiving any kind of government support.

Dr FREELANDER: Do you get sick of explaining your condition all the time?

Mrs Bird : Every year when school starts, when there are a whole new lot of teachers and a whole new lot of coaches et cetera.

Dr FREELANDER: If there was one thing to come out of this inquiry, do you each have a suggestion of what we should do?

Ms Kurth : Approve Xyrem for use here in Australia and get it on the PBS.

Ms Thompson : I agree with Monica but also education and awareness within doctors. A lot of GPs that I have been to haven't known what narcolepsy is or have a kind of movie scene idea of it in their head, which is really hard. Also important is specialist education so that they can properly educate their patients. I found that, when I did my own research and joined groups et cetera, I felt better about accepting the condition and, once I was educated, I felt like I knew how to handle it a bit better. Also, I was very happy to hear that there is a sleep psychologist. I was in tears and I asked my specialist directly: 'This is having a real impact on me. Is there any psychologist that is educated in sleep that I could go to?' She said, 'Oh, it's very rare; no-one will know how to help you. It will just be a general psychologist.' So I was really happy to hear there is such a thing. So linking patients with support networks would be really beneficial as well.

Mrs Bird : I agree with both Monica and Laura—and Xyrem, to a degree. As a mother of a 16-year-old girl I obviously have worries about the drug—not so much the drug itself but that's just me. I think education and research—so much research—needs to be done. If I could go back and do my time again, I would be the best bloody doctor and best bloody research you could possibly find, because there is nothing that I as a mother with a child with an issue can do that will get things fixed.

Mrs Chadwick : Education of doctors, starting from primary doctors to sleep specialists, across the board. Everything that Professor Ron Grunstein said is spot on. We don't have a sleep speciality in Australia, and we need to. That is part of the reason that doctors don't have experience in these disorders. It was said that there were 470 sleep specialists. The number of those who would know anything about narcolepsy and idiopathic hypersomnia would be small; yet they are diagnosing them and they are treating them, and that has to stop. You can't diagnose a medical condition that you know nothing about and you can't prescribe medication for if you don't know anything about the condition. And I know that there are a lot, because there are doctors who will actually tell their patients that they don't know anything about this, or 'I can't help you, because I don't know anything more', or 'This is it.'

So, education of doctors—absolutely, and access to medications, not just with Xyrem but modafinil. It's not on the PBS. I mean, it is as a second-line treatment option for narcolepsy—that's it. People with sleep apnoea and other disorders don't have access to it. The impact to Australian society of that alone—just of modafinil not being on the PBS for other sleep disorders—is huge. So, there are those issues, and of course it all comes down to the fact that there's no support for people with sleep disorders. We have these organisations that struggle and cobble along, providing information where there isn't any. But we just can't continue to do it without support, funding—that sort of thing. I put together the first idiopathic hypersomnia brochure that actually gives correct information as to what idiopathic hypersomnia is. It was vetted by international idiopathic hypersomnia researchers and also Professor Ron Grunstein. It now exists. But I paid for it personally. Before that there was no information, and I pay for it to be sent out to doctors and sleep specialists—or my husband does! And that's just crazy. Narcolepsy Australia does the same. It's crazy.

Ms Mobbs : I can't just narrow it to one, but mine would be the Xyrem. I understand that it might not work for everybody but, again, it would be nice to have that as another option, just as these other drugs we're all on don't work for all of us. And my biggest one—and this is probably the one I'm most passionate about—is education and awareness, especially from the health professionals we're dealing with. I believe that communication is a massive thing. It's not hard to show a bit of compassion and communicate in such a way to us. We're already struggling with this, and for most of us the knowledge we have is due to our own research and experiences that we have. It's not until we share these with each other that we realise that we're all dealing with it, that we're not crazy just because we're told we should have only these four symptoms et cetera; that's not the case.

So, it's about being open-minded and listening to us. I know they've got their qualification, but we're living with this every day of our lives. That's a huge thing—education. I don't want to feel like we have this stigma around us. I just want to be able to go about my life without feeling that we're talked about or laughed at, and when something goes wrong people look. As I said, I wear a medical bracelet everywhere I go. If I go to a running event I take care of it myself and I will put it in my registration forms. I will see the paramedics at the tent prior to the event. The biggest thing we always get lectured about, all of us, is sleep hygiene. And let me tell you, that's awesome for some of the sleep disorders, and I understand that it works. We probably have not got one thing that we haven't all tried to follow. Sleep hygiene—it doesn't matter; this changes. It's every day. We take it as it comes. We have no control over it.

Mr ZAPPIA: Can I add my thanks to each and every one of you for appearing before the committee today. I think it's probably wrapped up the committee's work really well, and I'm certainly very grateful for the evidence you've presented. Dr Freelander covered the areas that I was going to go to with my questions, but I just want to get one matter clarified. The issue of Xyrem: has there ever been an application for it to go to the Pharmaceutical Benefits Committee for approval? Does anyone know?

Prof. Hamilton : It can't. It's not on the TGA.

Mr ZAPPIA: It's not on the TGA?

Prof. Hamilton : So it can't. It has to get on the Register of Therapeutic Goods first, with the TGA, and the application's gone for that.

CHAIR: We're corrupting the Hansard record by doing it this way, so do you want to quickly come to the table?

Mr ZAPPIA: If I recall correctly, that was answered earlier on, in the earlier hearing. But I guess what I'm trying to get to is: has the company ever put in a submission to have it listed for TGA approval? Then that, in turn, would go to the next step.

Prof. Hamilton : Yes, they did, and it was rejected, and at this stage the company has elected not to resubmit.

Mr ZAPPIA: My next question is: why was it rejected? Does anybody know?

Prof. Hamilton : The feedback given to the company, which they forwarded to me, was that it was primarily on the grounds that they applied under the orphan disease classification, which makes it an easier and much cheaper application. They see it as not financially viable for them to go under a full application, but it was rejected as an orphan disease. They requested that some comparative studies be done with the standard current treatments. Those studies showed, unfortunately, that they don't really understand some things about the medical profession. They requested some trials that will never be done.

Mr ZAPPIA: Do you know when that was? You might be aware that there's been legislation that has now allowed some medications to be fast-tracked.

Prof. Hamilton : Yes, it was after the fast-tracking process. I don't know the exact date. It was late 2017 or early 2018. That was the time frame, roughly.

CHAIR: The fast-tracking was for something that qualifies as a life-saving medicine, wasn't it?

Mr ZAPPIA: I can follow that up.

Prof. Hamilton : It was definitely after the changes for the TGA.

CHAIR: You mentioned a company that I hadn't heard of before. It was not one of the big pharmaceuticals, was it?

Prof. Hamilton : No, they're not. They're called UCB.

CHAIR: They're not an Australian company, I assume. They're an international company?

Prof. Hamilton : They're an international company, and they distribute it overseas. A company called Jazz Pharmaceuticals is the main one that makes it and markets it. UCB were, I think, the intermediary for Jazz, who have no Australian presence.

Mr ZAPPIA: Thank you.

CHAIR: Thanks for rejoining us. Thank you all for being here, as well as Monica on the phone. The important thing about these inquiries, often, is actually hearing the type of testimony that you've given us today, because it puts everything we're doing into context and highlights how important it is. So it's been really great having you here, and I know it's been at some personal expense to get here for most of you. Thank you very much for your time. We'll send you a Hansard transcript of today's proceedings. If there's anything that occurs to you over the next couple of weeks that you think you should add to the submissions you've already made, feel free to contact the committee secretariat, and hopefully we can get something done. We're not miracle workers, but we'll try to be miracle workers if we can.

Committee adjourned at 13:07