Joel Werner: Hi and welcome to the Health Report, I'm Joel Werner.

Today, how something that for most of us would be no more than a minor complaint can, for someone with diabetes, quickly spiral out of control. In Lydija's case, her problems all began with a fashion choice.

Lydija: It was from wearing a pair of shoes that were not obviously made for my feet. So your feet are sort of squished into this wedge kind of thing, and my pinkie toe ended up getting like a blister. I put a bandaid on it, all that typical stuff that you wouldn't think of going into a doctor for, but I should have realised that, you know, given you've got diabetes, it's a little bit different as far as healing goes and scarring too and all that sort of stuff.

So I kind of left it, and a couple of weeks later it started getting worse. I ended up going to a hospital, because I got a fever and I got sick and stuff like that, and that's usually signs of infection and stuff. So that all happened, I ended up in hospital, and then I ended up with this necrotic toe, it was a black and it just didn't look right. So I ended up getting that cut off. That was going to happen regardless. That was about two, three years ago maybe. So yes, it was all just really mind-blowing.

Joel Werner: It's something so profound in your life that came from something that everyone has done. I've got blisters from wearing pointy shoes, it's not just a female thing.

Lydija: Yes, absolutely, it's such a common thing for people to get blisters and stuff like that, but I guess when you're a diabetic you've just got to be that extra bit careful, especially with your feet.

Joel Werner: And so once they diagnosed that the toe had to be amputated, can you take us through what happened then?

Lydija: I just remember crying, going, oh my gosh, I'm going to lose a toe, what are people going to think? What's going to happen? All these sort of things, like how am I going to deal with it? And I felt really bad for my family as well, it put a lot of pressure on them too because I stayed in hospital for maybe a week or two because I ended up getting pneumonia as well, so that put them off having to operate and all that. So it just prolonged it. And then eventually when I was better they could operate. The build-up to it was, like, you knew it was coming, it was going to happen because they told you, but to have that happen, it's a completely…you just don't expect to ever go through something like that. So it was really hard.

Joel Werner: We'll catch up with Lydija later in the show.

For people with diabetes, there's no such thing as a foot complaint too minor to ignore. Pete Lazzarini is a podiatrist and a research fellow at the Queensland University of Technology.

Peter Lazzarini: The high sugar levels causing damage to our blood vessels and our nerves in our bodies certainly impacts in our legs, in our feet. The feet are the furthest away from our vital organs, being our brain and our heart, so therefore the distance to travel for the nerves and the blood vessels is furthest down to our feet, and the longer the distance of the more likelihood of damage. So if they are damaged, those signals don't get back to our brain as they used to or not at all, and sometimes the circulation as well is quite poor and we tend to heal up slowly.

So we traditionally see people getting peripheral neuropathy, which is a lack of feeling in their feet. They can get a cut or a scratch that they don't feel, or they can burn themselves, and I've had patients that burn themselves and the first thing they know is they smell their flesh burning unfortunately. So they don't have what we call the gift of pain and they don't have that pain response. These people can wear a hole in their foot like they wear a hole in their sock and don't necessarily feel it. So if you don't have a pain response you generally don't think there's anything wrong and you won't do anything to cover it up.

You can get a wound and your body has a sluggish inflammatory response because it also isn't alerted to the fact there is a problem, and if we've got poor circulation on top of that we're left with an open wound which in turn has a very high chance of getting an infection, which unfortunately in diabetes is a regular occurrence, and that's when we are battling to try and keep that infection from going from bad to worse and needing to go into hospital to get antibiotics to try and get rid of that infection or having to cut out that infection via an amputation, and unfortunately that happens all too commonly.

In fact I had a patient yesterday who was in hospital had just had a below the knee amputation, wasn't aware of diabetes and stood on a piece of glass while he was doing work in the shed, didn't do anything about it, walked around on it for a couple of weeks, ended up with an infection, septicaemia, was taken off to hospital, and had to lose his lower limb unfortunately.

Joel Werner: Australia's diabetes related amputation rate is appalling; we're currently second worst in the developed world behind the US.

Peter Lazzarini: Australia's amputations are on the rise, aligning with the global increase as well, and unfortunately globally we have an amputation every 20 seconds, which is 1.5 million amputations each year. In Australia we have one about every 2 to 3 hours. In fact the statistics bear out that we've had a 30% increase in not only numbers but rate of amputations over the recent decade.

A number of independent research bodies internationally have shown us to be essentially the second worst performing country in the developed world when it comes to diabetes related amputation rates. In Australia our amputation rate is around the 18 per 100,000 population mark. The developed world average—so Europe, the United States, some parts of Asia and England—is around 12 per 100,000 population. The UK is even better on its own, it's coming in around 7 to 9 per 100,000 population. So these European countries and the UK in particular have amputation rates half and if not more than what we have here in Australia.

Joel Werner: But how can we be getting it so wrong? How can we be so far behind the rest of the developed world on this?

Peter Lazzarini: There's probably a number of facets to that. Unfortunately some of our systems in terms of Medicare probably don't allow the access that we require for these people to get the evidence-based treatments that they need. So, for example, a lot of the work that is being done in other countries in terms of using multidisciplinary foot teams, increased use of podiatrists in the communities, following the best treatments, using the best tools like air casts and moon boots and tracking data to make sure things are improving, these things that have been used in other countries successfully have also been advocated and included in fact in the NHMRC guidelines, and that's what we should be following.

However, Medicare appears, in a recent paper that we published, to not fund these in diabetic foot disease, and there seems to be a disparity between the funding of the diabetes foot disease guidelines, so their recommendations coming from the research there, and what's coming through, quite rightly so, in terms of funding for the cardiovascular and kidney and eye disease guidelines in diabetes, which are all funded via Medicare. And foot disease is only half funded, which essentially means that people don't have access to these moon boots which are casts that we put on people's feet to try and heal up wounds effectively and early. They don't have access to these multidisciplinary teams because our systems don't work together to ensure that there is direct referrals between some of the doctors and nurses and surgeons and podiatrists in particular that need these referrals.

And we don't collect the data as well to show that we are improving or we're not improving. And the old adage that you can't improve what you don't measure is certainly true in the diabetic foot world. So Joel, if we can fund what is already in the NHMRC guidelines and what we found to be up to a dozen peak research and health bodies across Australia are advocating for, we would get what has happened in other nations which is amputation rates half what we are seeing here. So if we can improve that access to those teams and those tools, things should improve, we believe.

Joel Werner: Do you have any indication from Medicare why foot disease seems to be the forgotten complication of diabetes?

Peter Lazzarini: No, we don't, and essentially the Medicare system as it's set up currently tends to fund Allied Health in particular with a limited amount of visits, which is five visits per year for people with diabetes, spread across dieticians, diabetes educators, Indigenous health workers, and podiatrists. And with diabetic foot disease, when people get these problems they need many more visits than this, which is evidenced in the guidelines. So people may need 12 visits in 12 weeks to a podiatrist to heal that wound up, along with their GP or surgeon. However, they may only get two, and so they then rely on the public health system, which is already overburdened with diabetic foot problems, to help them out. So they are not getting that treatment they need and urgently require, and if they had that that would keep them out of hospital, as we found in other nations and studies across Australia as well. So if we can potentially target the funding to the need, and not everyone with diabetes has foot disease, in fact around 20% to 30% will have foot disease, the other 70% of people with diabetes may only need a foot screen every year. Those other people will need increased visits, and that's the way we will keep them out of hospital.

Joel Werner: Someone living in an Indigenous population in Australia is three times more likely to get diabetes than the non-Indigenous population. Are these groups also more at risk of amputation?

Peter Lazzarini: Unfortunately yes, that bears out as well in terms of foot disease and amputation, Joel, and in fact it's worse. The Australian Institute of Health and Welfare in their most recent diabetes report show a 8- to 10-fold increase in terms of needing to go to hospital for a diabetic foot problem or needing an amputation. And one a landmark study in Western Australia that was recently published in the Medical Journal of Australia suggested that in various age groups that figure is actually 38-fold non-Indigenous populations.

Diabetes amputations unfortunately tends to disproportionately affect our Indigenous populations, but also our remote populations where the figures are about three- or four-fold our metropolitan populations in terms of amputations and hospitalisation. And also our poorer populations, so the lower socio-economic group has two-fold the hospitalisation and amputation rates of our higher socio-economic groups. So unfortunately diabetes in relations to amputations and foot disease tends to disproportionately affect our Indigenous, our remote, and our poor.

Joel Werner: While amputation rates are higher in at-risk groups, everyone with diabetes is susceptible.

Lydija, who we met earlier in the program, is an otherwise fit, healthy woman in her late 20s. But the amputation of her little toe was just the beginning of her diabetes related foot problems.

Lydija: It would have been about three years after that, I ended up going for a surf one day with a mate, got out, and I ended up stepping on some barnacles. I didn't even think anything of it, I'm really bad with these things. Like, you wouldn't think it could be that bad, it's just a barnacle, and you think, you know, salt water, it will be all right. So I ended up cutting my toe, and it wasn't deep at all, it was like, yes, I'll put a bandaid on it, it'll be fine, I'll wash it, keep it closed, kill the infection, all that sort of stuff. But a week after, it sort of got worse. So by the end of it my toe had become swollen to the point where I couldn't even bend it.

Joel Werner: After one week?

Lydija: Yes, about a week or so. And then I ended up with a swollen ankle. So my whole leg was like a log. I went to the doctors first and they were, like, yeah, that's not happening, you’re going to have to go to a hospital. And it was, like, okay. So I ended up going to the hospital, drove myself there, and had gone to the emergency department and one person was, like, look, it will be okay, we'll drain it out, put you on a drip, see what happens. And then another doctor said something else, and then the last doctor was one of the surgeon's hands and she was, like, nup, it's got to go. And that's when it was just like, oh my God, it's going to happen again. It was I think a lot harder the second time around because I was a little bit older and I'd been through that before.

Joel Werner: Also the big toe, it's involved crucially with your balance. It's a lot bigger appendage, it's a more significant operation. That must have been devastating.

Lydija: Yes, it's devastating, but you learn your lessons, so you know that a scratch, the slightest scratch, whatever, a cut, you go straight to a doctor and get something for it.

Joel Werner: So with the second operation, was it a lot more full-on an operation?

Lydija: Actually no. Do you know, I was awake when they did that. They gave me the local…

Joel Werner: Really? I'd just assumed that both of these operations were general anaesthetic.

Lydija: The first one they put me under so I was completely knocked out for it, asleep, but the second one they gave me the local and I was awake. So every now and then I'd get up to go and have a look but they'd give me the gas and then it just knocked me out and then I'd wake up again and they'd just have to keep doing that to me. But I was awake for it. Obviously I couldn't feel anything, didn't see anything. But yes, it didn't take long for them to do that. They basically left the wound open, and I had to have this machine attached to my foot to help with the tissue to develop and bring it up. That's been really hard, that was a year-long progress.

So yes, I couldn't do anything, I had to pretty much just sit at home and recover, wear a boot. I'd have to have a nurse come in to see me, so every second day a nurse would come and see me and just change the dressings. They did it for a long time. It was only recently, probably a couple of months ago where I actually just got rid of the nurse and didn't need them any more because it was just easier for me to even just put a piece of foam over the wound and just cover it up and compress it. That's just life I suppose, you've sort to got to learn to deal with it. I mean it's been hard, it was pretty upsetting, but I managed.

Joel Werner: Lydija, a young woman with diabetes, speaking about her second diabetes related toe amputation.

You're listening to the Health Report on RN. I'm Joel Werner.

If you're a person with diabetes who's concerned about foot complications, what should you do? Pete Lazzarini.

Peter Lazzarini: Well, like various conditions, we advocate, and the guidelines and evidence advocates an annual screen of your feet if you have diabetes to see if we can pick up these problems early. There's a couple of very simple tests that only take a couple of minutes and require very little equipment for us to work out whether you've got a neuropathy or nerve damage or peripheral vascular disease which gives you a higher chance of getting an ulcer on your foot. So we certainly advocate for everyone who is newly diagnosed and all people with diabetes to get an annual foot screen by their GP, podiatrist or practice nurse to pick up these problems early.

If they have these problems and they are picked up they should be going to see a podiatrist at least every three months to ensure that their foot is looked after, the callous is debrided so that doesn't turn into an ulcer that they are unaware of, that their footwear is appropriate, so their footwear is not causing damage to their feet and is in fact protecting their feet, and generally to educate patients on checking their feet every day when they have this damage to pick up problems before they become bigger because they don't have the gift of pain and they won't feel a problem, they'll need to visually check their feet for problems or get a family member to check their feet for problems.

On top of that, the people who end up with foot ulcers, we really need them to see multidisciplinary teams. Unfortunately in Australia we've estimated that we've got about 20 to 30 of these teams across Australia, so that's about one for every million people in Australia, the figures would bear out that we need one in every 100,000 population to care for these people in terms of having foot disease.

So we certainly need more of these teams and more funding of these teams, and that actually doesn't cost the health system in the long term, that will actually save significant money in the long term because we know also from some of our cost modelling that if we just save 25% of these amputations and hospitalisations and we have the best system in the world with the best teams and the best tools and the best access, we will actually be having a cost saving measure.

And we've just had a great study done in the States in Arizona by David Armstrong and his colleagues that have demonstrated when they've cut a Medicaid program looking after these people in the community and they've cut that system back, it's actually increased the cost to Arizona 44 times the original cost of the program through increases in amputation, hospitalisation and poorer outcomes, like death unfortunately. So for every dollar invested in the preventative program, when that was cut it cost them $44 in hospitalisation costs. So prevention in diabetic foot does certainly pay.

Joel Werner: You've recently had some great experiences in Queensland reducing this number, this high rate of foot amputations. Can you take us through what you did there?

Peter Lazzarini: We've just published some data and presented some data at a couple of national and international conferences recently that has shown that in Queensland when we've implemented these multidisciplinary teams throughout Queensland, Queensland Health, we've actually demonstrated up to a 40% decrease in hospitalisation of diabetic foot disease problems and amputation over the last five or six years. And in fact we were tracking in Queensland at around the 18 per 100,000 population mark in 2007/2008, as per the rest of the nation. Coincidentally when we implemented these teams, we actually in 2009/2010 that dropped off back to 15 per 100,000 population, which is a significant decrease, and our earlier figures for 2011 show that that's decreasing again.

And it's unfortunately not rocket science and we've seen it happen in other countries when we've got these teams and these services, primary, secondary and tertiary levels of services communicating and working together, we've seen these decreases and I daresay we'd see it happen across the nation when we can implement this nationwide.

Greg Johnson: Diabetes is the biggest health threat and the biggest health challenge that Australia faces in the 21st century. We need a new national diabetes strategy. Our vision is prevention, prevention and more prevention.

Joel Werner: The rules that apply for managing diabetes related amputation are the same rules that work at a whole disease level; prevention is key. That was Professor Greg Johnson, CEO of Diabetes Australia, launching a new national strategy at the National Press Club in June this year.

Diabetes is a global epidemic. Disease incidence has been on the rise for over 50 years, and currently shows no sign of slowing down. In Australia, it's estimated that 1.5 million people have diabetes, a figure that's set to double by 2025.

To put that in perspective; every day 280 Australians will develop the disease. It costs us $14.6 billion per annum. When it comes to preventing diabetes, a multi-faceted approach is essential. But good research should be at the heart of all preventative measures.

Len Harrison is a Professor of Molecular Medicine at the Walter and Eliza Hall Institute for Medical Research.

Les Harrison: Like most diseases, the best way to treat diabetes is to prevent it. If we knew how the environment has changed to increase the incidence of diabetes over the last few decades and we change those things in the environment, we could probably prevent about 50% of both type I and type II diabetes. That is easier said than done. The obvious thing is to reduce the prevalence of obesity which leads to insulin resistance and is a risk factor for both forms of diabetes, type I and type II.

Prevention is the approach. It will require a huge effort at all levels in our community, and I don't think we know yet how to do that. Clearly there are lots of vested interests, and my feeling is that the way to approach this is to start very early in life with mums who are pregnant and with mums who have toddlers and with children in preschool. It's probably too late by the time we preach education to people out there in the suburbs surrounded by fast food outlets, I think we need to be able to educate the population from the beginning, from probably before birth.

Joel Werner: Let's talk about the work you do at the Walter and Eliza Hall Institute. Your work employs a rather famous animal model. Can you tell us about the research that you do there and how you do it?

Les Harrison: Our main focus is to prevent type I diabetes, and we think that prevention will be necessary for the cure of type I diabetes as well. We have a very good animal model of type I diabetes called the non-obese diabetic, or NOD for short, mouse. This mouse develops autoimmune diabetes, destruction of the beta cells in the pancreas by the body's immune system, in a similar way to humans and has a number of features in common with humans who develop type I diabetes.

We can prevent type I diabetes in the mouse by a number of immune manipulations, and over the years we've attempted to translate those results in the mouse into trials for prevention of type I diabetes. One of the approaches that we've taken is to develop a vaccine which worked in the mouse and which we are currently trialling in humans.

Although insulin is the treatment for diabetes, in type I diabetes it's also a major target, probably the major target in children of the immune system when it begins to attack the beta cells. Many of the antibodies that we can measure, a long time, years before children develop type I diabetes, are directed to insulin itself, and we can now measure other cells in the immune system called T cells that are directed to insulin. So what we have done initially in the mouse and then also in the human trials, is to give back insulin in the form of a vaccine so that it will induce a protective immune response to itself which we hope will dampen down the bad immune response to insulin which is killing the beta cells.

We are attempting in humans to generate what are called regulatory T cells, cells of the immune system, which we know in the mouse are protective. When we took these regulatory cells from the mouse and transferred them to young mice that hadn't yet developed diabetes, they prevented the development of diabetes. And we know that we can induce these cells in humans, we know that by giving insulin a particular way through the immune system in the body's mucosal membranes that the response is a protective one.

And we know that we have induced protection at the level of the immune system in humans by this approach. The current trial that we are doing with a nasal insulin vaccine is to determine if what we call immune tolerance to insulin that we can induce, whether that can be translated into a prevention of diabetes, whether that will actually prevent diabetes in children and young adults who are at risk but have not yet proceeded along the track totally to symptoms of type I diabetes.

We are in the last stages of our trial and we are really keen to recruit at-risk individuals into the trial. If people are interested in this trial, they should go to stopdiabetes.com.au to find out more.

Joel Werner: It's not uncommon these days to hear reports that a cure for diabetes is just around the corner. It seems globally a number of different groups are working at identifying different causal mechanisms for the disease. Do you feel like the race is on?

Les Harrison: It's very competitive. Type I diabetes is probably going to be the first autoimmune disease prevented, and there are lots of groups around the world working on understanding the basic biology of type I diabetes, promoted by organisations such as the Juvenile Diabetes Research Foundation.

Joel Werner: And how close do you think we are? Are we really knocking on the door of preventing this disease?

Les Harrison: I think we're doing all the right things. I'm not sure how long it's going to take to get there. We understand enormously more about the mechanisms of type I diabetes these days, and I think it's just going to be a matter of time before we put all the pieces together and find out that something has worked. Something may happen out of left field and we always have to keep that possibility open, but a lot of the research that has been done is based on previous research and an understanding of the mechanisms.

There is no shortage of trials going on, and at some point, probably in the next one or two decades it will happen. And it needs to happen because in order to cure type I diabetes, for example with replacement of the body's insulin producing cells by transplantation, probably ultimately with stem cells, or by the regeneration of stem cells in a person's own pancreas by delivering the hormones that stimulate the stem cells to regenerate, that will require at the same time methods of prevention, because every time a new beta cell sticks its head up, the immune system has got a very good memory and it will see it as foreign, like it did originally, and attack it and damage it and destroy it.

So the attempts to cure type I diabetes by replacing insulin producing cells will require also the prevention of recurrence of disease. There are lots of people working on this around the world and every few months there's a new 'breakthrough'. I think people are wise not to jump to conclusions but to see how these things evolve. There have been several of these just in the last few weeks. Apart from our own paper in Nature Immunology in which we discovered a molecule which was previously unrecognised as being very important for controlling the immune system and which we showed had a role in preventing type I diabetes, there is another report from a very good researcher in Boston, Doug Milton, and his lab has discovered betatrophin which stimulates beta cells. And another molecule like the one we have just published, reported on, that might dampen down the immune system is the way that we are likely to prevent and cure type I diabetes in the longer term.

Joel Werner: Len Harrison, Professor of Molecular Medicine at the Walter and Eliza Hall Institute.

You also heard from podiatrist Pete Lazzarini, and Lydija, a young woman brave enough to share her story of diabetes related toe amputations.

For more information, including how you can be involved in the Stop Diabetes trial, head to the Health Report website. Just go to the RN homepage and select Health Report from the program menu.

But that's all we have for this week. Until next time, bye for now.