Ouch: The eye-popping costs of an eating disorder

SPEAKERS
Tim, Jim Hungerford, Simone Cheung, Chantel le Cross, Scott Macansh, Sam Ikin

Scott Macansh 00:06
She couldn’t make herself eat, even though she wanted to. That’s pretty well, when we realised we had a had a problem on our hands.

Chantel le Cross 00:15
Once we get into the time spent the travel across the year, I lose over 80 hours of paid work, just accessing treatment.

Simone Cheung 00:24
2.8 million people in 2023 had or has had an eating disorder in their lifetime.

Tim 00:31
The cost of going to hospital was so much money, that without them, there is no chance I would probably wouldn’t be here today, so wouldn’t be able to afford that individually.

Scott Macansh 00:41
Their whole life was basically trying to get Sophie Well, somehow.

Jim Hungerford 00:49
A company that has 100 staff, on average, they’re losing more than $44,000 a year due to eating disorders or caring for eating disorders among their staff.

Sam Ikin 01:03
If there’s one thing that gets the attention of our politicians, it’s money. It’s one of the big motivators in politics around the world. That’s not a secret. It’s not even controversial. For the past four years, we’ve been singing from the rafters on this podcast, about the need for governments to put more resources into preventing and treating eating disorders. And now thanks to a comprehensive national survey from butterfly and Deloitte, we can give them a very good reason

Jim Hungerford 01:32
$67 billion per year is the cost to the people of Australia and our economy.

Sam Ikin 01:39
That’s a lot of money. This is Butterfly: Let’s talk I’m Sam Ikin, and this is Butterfly’s CEO Jim Hungerford. He’s only been in the job for around six months, but he’s hit the ground running. He says quantifying the problem on a national level was well overdue.

Jim Hungerford 01:54
There was a early report in 2012. Since then, the cost of eating disorders has increased 36% in real terms, after adjusting for inflation.

Sam Ikin 02:05
This report shows what we already knew. The cost of eating disorders is devastating. But it’s not just an economic cost. It’s the social impact can’t be understated.

Jim Hungerford 02:16
The biggest parts are really the impact on the individual in the family. But there’s also huge impacts on productivity that is borne by employers. There’s of course, all the health expenditure that goes in. So this is a massive impact that affects all of us really. And then when you compare that to the amount of money that’s spent, to prevent eating disorders, or to support people who do develop them, that amount of money is miniscule. The crippling

Sam Ikin 02:43
impact of an eating disorder goes far further than the individual experiencing the behaviours. It’s also huge for parents, carers, other family members and friends, the ripple effect is significant.

Scott Macansh 02:56
Sophie daughter went away to boarding school up in Toowoomba, in Queensland. My name is Scott McAninch. I live in rural New South Wales. We have a farm there and three children, the eldest of whom developed an eating disorder in her early teens. And I guess that’s why I’m here. She’s always been a very sporty kid, and loved playing everything from netball, touch football, anything, any ball sports you could lay hands on. And so she threw herself into everything, and was really enjoying it. She was saying perfectly happy, everything was fine. She was loving life and everything was going well. She had fitted into school and was loving everything, but it was just the weight wasn’t a good thing. And we started trying to turn it around a bit ourselves then, but it just slowly progressed. There at about the age of sort of 16 we realised that this was getting this was getting pretty serious when we started speaking to her coaches and whatever and realised she was training about 12 times a week for different sports and whatever and was just living on basically the salad bar at the boarding house because she was trying to keep herself in in peak condition.

Sam Ikin 04:41
Before we let Scott continue on his story, there was another significant development that we need to bring in now from this report, and that is a startling change in the age of the onset of eating disorders.

Jim Hungerford 04:53
Something that really surprised me is that the typical age of onset has become much younger overlap. 12 years. So back in 2012, the people with the highest incidence of eating disorders were young adults aged 20 to 24. Now, the people with the highest incidence are teenagers aged 15, to 19. And I think that five years earlier onset, you know, and when you think about that time of your life, and all of the social pressures that are affecting you, then, especially these days, with social media, or the school pressures, everything that happens, you can understand why it’s occurring then. But it’s such a concern that we have these young people who are developing sometimes, as we all know, incredibly impactful conditions that can change the rest of their life.

Sam Ikin 05:40
Now, let’s get back to Scott, he was telling us about his concerns about his daughter’s disordered eating. And the first port of call for him was a dietitian.

Scott Macansh 05:48
They went through a diet and basically said, “You’re doing the right thing restricting you’re just restricting the wrong foods,” which is not in hindsight, not a good thing to tell someone who actually has an eating disorder. Admittedly, the dietitian didn’t realise that they had an eating disorder at that stage. Then we sort of started thinking, okay, this is a little bit more serious. And especially when she got to a point when she did realise that it was the lack of food that was causing the decrease in performance. But at that point, she couldn’t make yourself eat, even though she wanted to. And that’s pretty well, when we realised we had a had a problem on our hands.

Sam Ikin 06:40
Desperate to find help for his daughter, Scott took her to see a veritable cascade of GPS and psychologists, psychiatrists, other dietitians are driving for hours at a time to get there, and remember, this was all during her final few years of high school.

Scott Macansh 06:55
In year 12, we just ended up having to pull her out of school, cause she had just completely crashed. Her eating disorder morphed, changed from sort of anorexia into a night eating disorder, which then developed into binge eating, and yeah, we brought home then and just continued to try and find a psychologist or someone, anyone that could help, and finally, we managed to find a dietitian down in Tamworth, who was a godsend. It started to look like we had a light at the end of the tunnel, that suddenly we thought we had a at least a path to follow. Up until that point, we were completely completely in the dark, no one we’d come across had really had any experience with it knew what to do knew where to go. It basically took over the whole family, my wife and I, our whole life was basically trying to get Sophie well, somehow, or find some way to get her well, to start with, and because of that, our two boys, they didn’t get anywhere near the attention they needed as as children as well, because we were so totally focused on trying to sort this issue out.

Sam Ikin 08:32
From there, Scott was able to find a great psychologist within a two hour drive home, which for him is reasonably close when you live in the bush. Sophie’s road to recovery became just a little bit clearer. Add to that bearing and worrying about economic and psychosocial costs to his family. It’s exhausting. But Butterfly’s new report clearly shows that Scott and his family were far from alone. Another significant piece of information from this report shows us that he needed to felt like that, and alarming increase in the prevalence and the cost of eating disorders. 1.1 million Australians now live with an eating disorder.

Simone Cheung 09:12
On top of that 1.7 million people had an eating disorder in their lifetime in 2023. So if you add those together, that’s actually saying 2.8 million people in 2023 had or has had an eating disorder in their lifetime. I’m Simone Cheung. I’m a partner in Deloitte Access Economics. I specialise primarily in Health and Human Services. I’d like to describe what I do as measuring the immeasurable, using data and evidence to actually shed light and make policies better in health and social care. The way that we calculate these economic costs is really we look at the number of people so prevalence, number of people that have an eating disorder. We look At the impacts that people have, or people face with an eating disorder, so this could be that they need access to health care services, or they need informal care by families and friends. And they also have impacts around their quality of life, or well being. And so we look at how many people, what are the impacts, and then we put $1 value on those impacts, essentially.

Sam Ikin 10:32
Simone also found that it’s costing people more to find the help that they need.

Simone Cheung 10:37
Costs have increased by 36%, since 2012, and part of that has been driven by an increase in use of health care services. And part of that is an increase in understanding of eating disorders and the health care services that they need and require for recovery. So things like residential care, etc, has been more available than previous.

Sam Ikin 11:09
So it was prevalence of eating disorders is increasing, and awareness is growing, more people are seeking treatment since 2012. And that’s a good thing. But for ordinary individuals, the costs around care are just too high.

Chantel le Cross 11:23
The costs of my eating sort of takes up about 20% of my annual income. And this is even with Medicare rebates and private health insurance.

Sam Ikin 11:33
This is Chantel, and like a lot of our lived experience guests, they’ve been through a long and arduous journey with an eating disorder.

Chantel le Cross 11:41
My first real memory of disordered eating and body image issues are as young as nine or 10. I was dancer and I was quite active, but my body was just different from everyone else, I was just built differently and I never really thought much of it until I started noticing the way other people spoke about my body. And the way it was received and perceived and described. I was never really able to receive any formal support, or a diagnosis, even though I was in inpatient care as well, later on, in my teens, I ended up in an inpatient mental health facility. Even though I was talking about it openly with my therapists, and in group therapy about a lot of the dangerous habits I was engaging in, I’m not really sure why but it wasn’t really received as something that urgently needed to be addressed and I feel like it was a little bit dismissed as part of like, you know, a natural experience of, you know, the, the puberty experience. And a lot of the times when I really thought that I had made it through and I was out the other side, I actually took a step back and realise that I was still quite deep in the eating disorder I had just had taken on a new form. And that’s happened a few times and I’ve really had to do a lot of work to keep myself accountable and, and really make sure I’m being open and honest about where I’m at.

Sam Ikin 13:12
For Chantel just keeping in touch with their treatment team is really squeezing them financially.

Chantel le Cross 13:19
Just just accessing a therapist with fortnightly sessions, and quarterly psychiatrists sessions to manage my medication, quarterly dietitian set sessions that runs up $11,738.90 annually. And that’s like that doesn’t even factor in that’s just those sessions. Once we get into the time spent the travel across the year, I lose over 80 hours of paid work, just accessing treatment. And so that equates to $3,400 in lost wages. Once you include travel costs, that adds another $1,200 to the bill, bringing the total costs to $16,338.90. That’s $314.20 a week and I’m not even accessing all the treatment that I need.

Sam Ikin 14:17
Those sort of expenses have a huge impact on someone’s life. But the cost to the individual or family is just the start.

Jim Hungerford 14:25
Now having current information, really being able to talk about what is the impact on Australian society right now that makes the biggest difference. But also, there’s been a lot of methodological improvements between the two reports just as everything moves on. So we’re able to speak with a lot more confidence about how much the effects are one example which isn’t really a government example, but much more for society. Employers, a company that has 100 staff, on average, they’re losing more than $44,000 a year, due to eating disorders or caring for eating disorders among their staff, it’s really important for employers to be able to provide the right support for their staff who might have or might be caring for somebody with an eating disorder to ensure that that goes as well as possible so that their person can stay and flourish within the workplace.

Sam Ikin 15:23
As Jim told us earlier, the report found that the economic and social cost of eating disorders has grown to $67 billion dollars in 2023. $67 billion.

Simone Cheung 15:37
So it’s $67 billion over the 1.1 million people, which means, on average, it’s costing each person with an eating disorder $60,000, or around $61,000.

Sam Ikin 15:55
So does that mean each person with an eating disorder is is essentially has a bill of $ 60,700 per person, or is a lot of that picked up by our health system, for example.

Simone Cheung 16:06
It is a bill but it’s being paid for by different people. So some of that is being borne by individuals, some of that is being paid for by government through health care, some of it is lost productivity for carers in time that they’ve spent caring for someone with an eating disorder.

Sam Ikin 16:25
Holy dooley, that is huge.

Simone Cheung 16:29
$251 million of that is health system costs and this includes anything from, you know, medication, pharmaceuticals, to health care services, allied health, etc. There are some other costs. But by far the largest cost component is the last, the loss in wellbeing. So basically loss in wellbeing for individuals who are living with an eating disorder. Then the second highest is productivity. And this is because eating disorders, as we have looked at affect younger people more and people who are in working age population, so 15 to 65 year olds, and so we’re seeing productivity costs as part of that total cost being almost 27%, so 18, almost $18 billion, is in productivity losses.

Sam Ikin 17:29
One of the key takeaways from the report is that eating disorders are coming on younger. We spoke about that earlier. That means they’re happening frequently when people are in high school or in early stages of their career. The years that kind of sets you up for life.

Tim 17:44
I’d gone to England, and tried to have some somewhat of a normal social working life and it just was not possible when you’re suffering from an eating disorder. Every part of your life is dictated by that dictated by the decisions that you can make.

Sam Ikin 18:00
Tim’s eating disorder started when he was 21 and is complicated by a diagnosis of obsessive compulsive disorder. He thought that a move abroad might help.

Tim 18:12
Being so sick at the time. I just didn’t I couldn’t make those decisions. I was working 14 hour shifts somehow. And it just impacted me I had to come home and I gotta manage emergency flight home went straight in the hospital. Even after those hospital admissions, I was I was riddled with fear of people seeing me how I was because I was quite sick. So I had just become a recluse. When I could work, it was short two hour shifts just because I didn’t have the energy to be able to go through the full full working day.

Sam Ikin 18:43
Even though he was a young adult at the time, Tim’s parents stepped up and shouldered a lot of the burden to help him get better.

Tim 18:50
My parents have always been people that say, if you’re sick, you better to get the care. Now, they’ve always thrown money at everything I’ve needed. And I’ve needed many things flying to Brisbane for treatment for OCD, and everything like that. I’m one of the lucky ones, the small percentage that have been able to have the financial backing of the main supporters to be able to go in, even though that was accounted for the financial burden, that the cost of going to hospital was so much money, that without them there is no chance I would say I probably wouldn’t be here today because I would not be able to afford that individually.

Sam Ikin 19:30
Aren’t they amazing parents, the parents who stand by people through this, the toll that they… I guess the cost to them is more than just financial as well.

Tim 19:41
No, I think I think your first your first work was was perfect. It was a toll. I saw what it did to my parents and that was another influencing factor or maybe getting better just seeing my parents worn down. And the first time my dad saw me when he came over to England, he just started crying. He wouldn’t talk to me, my brother couldn’t see me, look at me when I came back from England, the emotional toll it took on everyone, even my friends, my relationships was really, really tough. And I can’t thank everyone in my support network enough to suffer standing, buying by me and believing in me to get better. You lose friendships, because you’ve become very flaky. I became very flaky with going out and socialising and everyone’s trying to live a normal life. And they can’t always keep up with a bloke that’s just sort of not willing to come out. So we’re relationships, sort of, all of them ended. Trying to have a romantic life in the middle of an eating disorder just didn’t happen. But now, that’s, that’s perfect. I’m getting married in two months. So that’s all fixed. I was fortunate enough to be on a really good road to recovery before my dad died. He was very, very happy that I’d made that, that extra work. And it even when he died, he said he was so proud of me was one of the last words he said to me, sorry, that will always keep me going. And I have no intention on ever going back, because life is so good now.

Sam Ikin 21:21
Sorry, you find me that was? Sorry? No, that’s okay. I think it’s, it’s lovely that you that you got to share that moment with. Here’s a few other significant figures for you, before we wrap up this story. Women are twice as likely as men to experience an eating disorder. And less than one in three 30% of those with eating disorders actually go and seek help. So if we’ve got so many people out there who aren’t going to seek help, or aren’t telling anybody that they have an eating disorder, is there a portion of the population that’s being missed?

Jim Hungerford 21:58
The figures are really an under estimate of the real extent of the problem. The reason for that is twofold. One of which is we know that less than a third of people with eating disorders actually reach out for help so as a result of that, all of the effort that gets put into support and treatment and things like that, really there should be three times as much being spent on that area there. And then similarly, because of the fact that it’s behind the scenes, and we haven’t done a proper Australian wide prevalence study. All of those estimates about are given we have to multiply everything by three. And then we’ve got to think, well, if only people were reaching out getting support, we would do this, etc. All of those estimates, I believe, are significant under estimates of the real depth of the problem.

Simone Cheung 22:46
All of the data is based on existing data that’s already been in the system. And so to that extent, it’s as reliable as the data is to us. One of the things that we have found around the data is it is still patchy when you break down by the different types of eating disorders. So when we think about eating disorder types, we tend to think about mostly anorexia and bulimia, which are readily available in our health system datasets. Once we get into binge eating disorders, ARFID, OSFID, UFED, etc. the data when you break it down into those conditions gets more patchy.

Sam Ikin 23:33
Now, if you don’t know what those acronyms mean, yet, ARFID is avoidant restrictive eating disorder, OSFED is other specified feeding and eating disorder, and UFED is unspecified feeding and eating disorder, there are so many different kinds of eating disorders. If you go to the Butterfly website, you can find out a little bit more information on all of them. So now that we have a reasonably good idea that this is a pretty big problem, and it’s getting worse, what can we do with this information?

Jim Hungerford 24:03
What we’re calling for is to maintain that the effort that the government’s putting in on therapy and treatment, the support for the residentials, things like that, but the desperate need to hugely increase the amount of money they invest into prevention. So we’re calling for the government to have recurrent funding, so each year to spend $12 million on prevention. So that’s less than 5% of the direct costs, the health costs that the government pays out, but it will pay back so hugely by reducing the number of people with eating disorders in the future. And so we’ve never been funded for for our health promotion work that we do in the community. We have received some funds for the for the school programmes that we run, but much more needs to be done and whether it’s dumped by Butterfly or by the other sector partners, were just desperate for the government to get behind that and really support this significant increase in spend.

Chantel le Cross 24:58
Politicians really need to understand the responsibility that they have, and I’m sure that they understand the power that they yield in terms of what policies and legislation they can put forward. But like, they have more responsibility to their current constituents, they also have responsibility to the future constituents. Because you know, that the impacts that we’re seeing right now in terms of the cost of living crisis, and their housing crisis, that is policy from, like, 10 years ago. So the policy that people are enacting now might not have a huge impact on people today, but it will impact their children and their grandchildren.

Scott Macansh 25:42
A lot of people don’t really understand what an eating disorder is, and who the main groups are that that get that are affected by it. And so I think, I think it’s just, they have to just get out there and talk to people who have been there who know about it, so they can educate themselves so that then they can sort of start making some good plans to help these people because they’re really struggling, especially in rural Australia to, to get the help they need at the moment. It’s a long hard road, and it’s much longer than it needs to be. It has got a fairly slow decline down into it. And if it can be picked up quickly in that state of decline, things can be turned around fairly quickly, I’d imagine. If it’s years before you get a diagnosis and some paths for treatment, the eating disorder has such a hold on the on the person that it’s really hard and time consuming to turn it around.

Sam Ikin 27:01
If you’d like to have a look at the report yourself, it’s on the Butterfly website. If you go to butterfly.org.au, you’ll be able to click through all the links and find the full report and all of the data. For support or to find out more about eating disorders, the best first step to take is to reach out to the Butterfly Helpline. It’s 1 800 33 46 73 That’s 1 800 ED HOPE. There are also heaps of online resources as well if you just want to find out a little bit more about eating disorders or see what kind of prevention programmes are available, butterfly.org.au is the website. And that’s all we have time for in this episode. Butterfly: Let’s Talk is produced by Ikin Media for the Butterfly Foundation with the support of Waratah Education Foundation. Our executive producer was Camilla Becket, we have lived experience support Kate Mulray, Editing general production and hosting is done by me. I’m Sam Ikin, and if you’d like to support us in any way, the best thing that you can do is share this podcast with a friend or write us a review in the app that you’re listening to right now. I’m Sam Ikin thank you so much for your company.