Maria Craig
Meet Maria:
Maria Craig’s major research interest lies in childhood diabetes, including studies focused on the prediction and prevention of Type 1 Diabetes. Maria is increasingly concerned about the association between viruses and Type 1 Diabetes, a shared area of interest which is identifiable in her collaboration with the Virology Research Group. She is the principal investigator for the CoRD trial, a world first Phase 1 study, utilising autologous cord blood for the prevention of Type 1 Diabetes in children with islet autoimmunity. Maria is the Medical Director for the Australasian Diabetes Data Network and the President-Elect of the Asia Pacific Paediatric Endocrine Society (APPES), where she acts in a vital role to lead programmes for CLAN.
Heres how our interview went:
Can you tell us a bit about yourself?
I’m a Paediatric Endocrinologist. I work at the children’s hospital at Westmead and St George hospital, and I have academic appointments as Professor of Paediatric Endocrinology at the University of Sydney and the University of New South Wales. I, as a paediatric endocrinologist, I work in a range of endocrine disorders that are passions of CLAN as well as mine. They include Congenital Adrenal Hyperplasia and childhood Diabetes. I spend about 70% of my time now doing research, and my major research interest is actually Type 1 Diabetes, so it’s quite pertinent to this interview, the discussion of the trajectory of knowledge of causes of diabetes in children over recent decades but also one hundred plus years.
Tell us a bit about your role with APPES, and any recent changes coming to light there.
So I’ve been involved with APPES, the Asia Pacific Paediatric Endocrine Society, since the society began in 1999. At that time I was just coming to the end of my training as a paediatric endocrinologist, and my wonderful mentor Professor Chris Cowell asked me to help him setup the first Fellow school, so basically a three day training course for up and coming paediatric endocrinologists across the Asia Pacific region. That first school was held in the Genting Highlands in Malaysia, just immediately before the first APPES international meeting that was held in Kuala Lumpur. That meeting - so I was really the dogsbody, helped set up the training school - but it was a fantastic introduction to disparities in care across the Asia Pacific region, to the range of diseases that are treated across the region, and particularly different prevalence of disease compared to what I saw in my training in Western Sydney. Also it was the start of building some fantastic relationships with colleagues and many of those relationships have continued to this day. So I transitioned from being the helper to the coordinator of this Fellows training school and that continued until about three or for years ago I can’t quite remember, but I did it for a long time and handed the baton over, but I have since transitioned to a role on the APPES education committee as well as being the President Elect of the society, and probably most relevant to this discussion I’ve also been part of the APPES working group on chronic diseases in the region that’s been led by Kate. So I’ve had a longstanding involvement with APPES since it’s inception and I look forward to taking over as the President in a bit over a years time.
In general, what is the achievement or contribution you’ve made that you’re most proud of?
That’s always a really hard question. Look I think in the context of this interview I would actually say my support of endocrine conditions globally, and I guess the two, I know you asked for one, but probably the number 1 highlight is actually, and I was reflecting on this when I was speaking to kate the other day, I first met Kate i think it was in 2008 when Chris Cowell, my mentor, connected me with Kate and said Kate had come back from Vietnam and was really worried about the number of children with Diabetes and how they weren’t able to access insulin, there were a number that were dying, and she felt after the work that she had done in Congenital Adrenal Hyperplasia with other people that she felt children with Diabetes really needed some attention, and of course Chris Cowell knew that my passion was diabetes, he connected me with Kate. I’ll never forget sitting in the back of a taxi going to a meeting at the Australian Institute of Health and Welfare in Canberra, wearing one of my hats, with regard to informing the government on diabetes publications and use of data. Anyway to cut a long story short I went to Vietnam and they had what’s called a club of children with diabetes where they all come together - it was actually at a waterpark in Hanoi - and I was struck by the number of children who were diagnosed with diabetes before 6 months of age, and some of them were quite severely disabled and they were being treated with insulin and the families were struggling to access insulin and obviously at that time also struggling to access blood glucose testing. I said to the head of endocrinology at the time, ‘have you considered doing genetic testing for neonatal diabetes,’ which is a fairly rare form of diabetes that occurs in children under the age of 6 months, but the outstanding feature of this condition is that it can be treated with tablets rather than insulin, which certainly when I was training, nobody ever thought that you could treat childhood diabetes with anything else apart from insulin. But we actually had a, when I was training, a little baby born in our unit who developed diabetes. I can’t remember exactly but it was about two weeks of age and I remember looking after her when I was on call, and eventually her DNA was sent to the UK to Andrew Hattersley, who is a specialist in Exeter, and she contributed to a series of children that were found to have this rare condition - neonatal diabetes - and a whole bunch of those children ended up being able to come off insulin and be treated with tablets which is absolutely phenomenal, almost a miracle at the time. So these families in Vietnam that were struggling to afford and to even access insulin, I managed to connect the head of the department at the time with Andrew Hattersley in the UK who I knew and said ‘can we organise sending DNA for testing’ and to cut a long story short, the paper that’s led to this interview now highlights seventy children diagnosed with this condition in Vietnam who have had their life changed because they no longer need to be treated with insulin. Now obviously I’m not the super smart person that discovered the gene but I do feel quite proud of the fact that I was able to provide that knowledge to the endocrinologist in Vietnam, bearing in mind that in Vietnam at that time they had very little access to you know the level of training that we fortunately have in Australia. So I’m proud of that, but I guess the other thing that I’m proud of is that I have taken on the role as an editor of the International Society for Paediatric and Adolescent Diabetes or ISPAD guidelines as the editor-in-chief and I have been involved in those guidelines again for more than 10 years but it’s a real honour to be taking on that role as the editor-in-chief but it has also enabled me to really be a voice for involvement of people from the Asia-Pacific region as well as the rest of the world and I’ve really been an advocate for ensuring that this is not a series of guidelines that apply to children that live in purely white wealthy suburbs whether it’s in Australia or the UK or the US, and make sure that the guidelines are really focussing on children who live with diabetes in all sorts of settings including very resource poor settings. And one of the chapters in those guidelines is specifically about genetic forms of diabetes such as neonatal diabetes.
What inspires you to do what you do?
Now that’s a good question, I mean I love what I do and it’s very rewarding. I love being able to put my knowledge into action but it’s multi-layered because I absolutely enjoy the interaction with families, even in the context of COVID where it’s all tele-health or over the phone, people asking me questions being able to empower families and educate them - and that’s not just in Sydney but also when I’ve travelled overseas doing those clubs in Vietnam or other places - actually being able to educate people. But I also absolutely enjoy research - I feel like all of the PhD and Honours students that I’ve supported that have gone onto bigger and better things, some of them have ended up as endocrinologists, I feel like it’s one big family that I’ve looked after and I think I’ve been fortunate to have been born with half a brain and live in a country where we have access to really outstanding education and have a really good public health system and I just live by the, you know you have to give back, so I’ll keep doing that until I can’t do anymore. It’s just the cycle of life - people have looked after me, people have mentored me, people have really in this structure of medicine I’ve been so fortunate that I’ve had amazing mentors and amazing support, so I just feel like it’s my job to do the same and give back.
What is the driving force behind how closely you work with the diabetes community? What attracts you to this cause?
So that’s sort of a little bit of chance. When I was a seventeen year-old medical student at the University of Melbourne, a university student who was a few years above me came up to me out of the blue - I must’ve been standing around looking bored or something I don't know - she came up to me and said ‘are you interested in going on a diabetes camp?’ and I had done quite a lot of leadership when I was at school (Duke of Edinburgh et cetera) and didn’t know anything about diabetes at that time I was in first year medicine and I was struggling to keep up with all the lectures, but I said yes and I went on this camp and I was absolutely flabbergasted about how these children were having to prick their fingers and inject themselves or have someone else inject them and measure their food and that really ignited a passion in me to why does this happen? I kept doing the camps right through medical school and I ended up setting up a - so those camps at the time were for younger children - so I ended up setting up a camp for teenagers called ‘The Injectors’ - it’s a pretty daggy name really but the group was called ‘The Injectors’ - and we would go camping, like proper camping in tents with adolescents and just trying to empower them to manage their diabetes outside their comfort zones, away from their parents, teaching them about their diabetes. I knew I wanted to do paediatrics, but then when I finished my paediatric training that’s how I ended up in diabetes. So the passion is really I guess from those early days of seeing what a difficult disease this is but at the same time how amazing it is that some young people can demonstrate incredible resilience and manage with the burden of living with Type 1 Diabetes. In those days you had to prick your fingers, obviously we have better technology now, we didn’t have insulin pumps, we didn’t have the knowledge that we have now about preventing complications but nevertheless I was in awe of the resilience of these young people and I guess that ignited my passion to really understand the cause and that’s really one of my major areas of research - the cause of Type 1. There’s obviously this small group of children with the genetic form of early onset diabetes or neonatal diabetes but for the one in three-hundred children in Australia and in many parts of the world living with Type 1 if we can really understand the cause then we can move towards prevention, and possibly a cure as well.
We’d love to learn more about your work with the Diabetes community in Vietnam - tell us a bit about it.
It struck me many years ago, before I’d been to Vietnam, that if you were well off and your family could afford the best technology and you went to a good school and there was good support, buy in large, you did quite well with type 1. Part of that also probably relates to family support - if you have a nuclear family - if you’ve been brought up… you know all the psychological determinants of health - bonding and those sorts of things - then you will manage well, and I’ve certainly looked after children now with Type 1 who’ve been diagnosed in the first years of life who are now finishing or have finished school and their coping skills, their resilience are frequently related to socioeconomic status. That is not to say it is universal, there are certainly young people who come from high socioeconomic status backgrounds who don’t cope, but I do think if you’ve got a nuclear family, you’ve got good support, you’re taught resilience from a young age, you’ve got a good network of family and friends, that you get on with things. And of course then you can also afford technology: the 30% of people in Australia who have private health insurance can afford insulin pumps and insulin pumps have revolutionised diabetes management for the last seventeen, eighteen years and probably twenty years when you look at countries, and if you live in Boston or Stanford or somewhere like that you do very well, but if you live in the middle of America you don't do particularly well, or out of the big cities in Australia and in answer to your question, if you extrapolate that to countries like Vietnam, I was absolutely flabbergasted by the concept that insulin wasn’t provided by the government. You know we have the PBS system here where nobody can’t afford insulin in Australia, everyone with Type 1 Diabetes gets a healthcare card, so the supply of insulin is six dollars, even though for some families that still is a lot of money it’s affordable, and there are ways around if they can’t afford it, whereas in Vietnam there are huge obstacles to getting insulin. Families have to go to the hospital once a month to get it, the prices are high, they’d have to wait for hours in the queue, so you know there are real issues with equity in countries that have a very different health system to ours, a very stretched health system. The other thing that struck me and I guess this has been my passion with regard to educating not just the paediatric endocrinologists and paediatricians in training but also setting up workshops to train allied health professionals like diabetes educators, is the fact that the knowledge of the staff working with children with diabetes was sometimes suboptimal and part of that was related to their training, part of that was related to the fact that in countries like Vietnam Type 1 Diabetes isn’t so common and when you manage common things you get good at it quite quickly but when you manage something that’s less common you don’t manage it as well, and I guess that gets back to the neonatal diabetes. They saw a lot of diabetes in young children and they just weren’t aware that it could be treated in a different way with tablets.
Does that answer your question? There’s so much to say about health systems in other countries and I think power is knowledge and so I can feel I can make the biggest difference by supporting training of doctors and allied health professionals, and working with CLAN you know through their grass roots approach, through empowering families, through translating resource materials such as the diabetes manual that CLAN has supported, so that families do actually have that knowledge to be able to manage their child with this chronic condition.
The project that I mentioned with the paper that stimulated this interview, that’s actually been going on for some time. After that first trip to Hanoi with Kate, I had a medical student… so wearing my university hat I had Honours or what are called ‘Independent Learning Project’ students come and work with me really every year since the program started about twenty years ago, and I had a student approach me who herself was a child of Vietnamese parents who had come over, and she was really interested in doing a research project with me and I invited her to come to one of these club meetings in Hanoi and Ho Chi Minh City and it was fantastic for her to be able to go back in that context - see how lucky she was thanks to her parents. She contributed to writing up the first series of cases of children in Vietnam. I think that was 2011 that that paper came out and it was really the first time that there had been a publication from that unit in Vietnam showing that about ten percent of their population of children with diabetes had this condition called neonatal diabetes - the genetic form - and by that stage it wasn’t 70 cases it was a smaller number, I can’t remember maybe 12 or 13, that was the first step in this collaboration with this team, in particular Dr Zung from Hanoi who now runs the unit. And then I’ve been going back and forth, helping them to setup their pump program, helping them with education, training of their junior doctors, run a lot of educational meetings in different formats in both the North and the South of Vietnam over the years, and then they’ve been talking about writing up this larger series sending DNA to Exeter to have the patients analysed, obviously doing their bits and everything which takes time. I’ve helped them put together the manuscript obviously because training in English, particularly in written English, and medical writing is a huge challenge when you come from a country that doesn’t have an english-based language or a Latinate language I guess is the term isn’t it. So that’s this project that’s come to fruition with the publication of this manuscript and I’m really, really incredibly proud to have supported the team there, to have this published in a very good journal, because obviously you’re always on back-foot when trying to publish in a medical journal where you don’t come from the US or the UK or Australia and English is not your first language, making sure that you followed scientific methods. So that’s really the first of I think quite a number of - well not the first because the first paper as I said was 2011, but I really look forward to ongoing collaboration with them and supporting them to really do the best thing for the doctors in terms of their careers, because having publications is important, but more importantly publishing data on patients, obviously it’s deidentified, but publishing data showing the burden of disease, and in this case it’s one of the largest series within a city of children with neonatal diabetes, highlights to the Ministry of Health in Vietnam. I know I have a connection to the Ministry of Health - and I’m not blowing my own trumpet here but I was awarded their medal some years ago so they know me - and so for Joseph and his team to have a paper with my name on it that says ‘look at the burden we have of disease of children with neonatal diabetes’ - that is very powerful for them then going to the Ministry of Health and saying ‘we are not adequately resourced, these children need access to insulin,’ or you know other medications et cetera.
Also within Vietnam it helps doctors who are working within Huế - I’ve been there with Kate - or in Ho Chi Minh City, and in other provinces, it increases their awareness. I think also it does provide some inspiration to the next generation of doctors who are training and they see that this is an important area and ‘look we’ve got this great leadership from people like Dr Zung in Hanoi and international collaborations,’ I think that’s a win-win situation.
What inspired you to start working with CLAN?
It was that connection with Chris Cowell who is a paediatric endocrinologist - he’s now the Director of Research at the Children’s Hospital - I don’t know I think sometimes fate just delivers us things and you meet people and they like you and see you have potential. I met him on my first day as a registrar in I think it was ‘93, and he just for whatever reason saw that I had some potential and so mentored me, and you know it was sort of on and off but he was always looking out - he didn’t supervise my PhD it was someone else - but he was always looking out for me and it was that link when Kate contacted him and said ‘look I’m worried about the situation with diabetes in Vietnam, do you know anyone who’d be interested?’ and Chris put my name forward. Of course then I met Kate and you guys don’t need me to tell you she’s an incredibly inspiring individual, incredibly passionate, and we just hit it off. It’s been an incredible working relationship with Kate and friendship and I just so believe in what she’s doing. I spent a lot of time looking at the work that she’s done, the resources she’s put together, talking to her about the rationale for why she does what she does and the way she does it, the pillars, the empowerment of families, she’s a very strategic thinker. I’m just very lucky to have her as a friend and as a colleague.
What is your role within CLAN?
I’m on the committee. I think I’m an honorary life member or something like that. I’m on the committee - I’m an ordinary committee member, I’m not an office bearer. I provide advice to CLAN, and as you know CLAN has people with a mixture of expertise, you have Angie Middlehurst who’s an enormously experienced diabetes educator with a long track record of working in resource poor settings. I’m currently the only paediatric endocrinologist in the group but you know we’ve got obviously a fantastic team including yourselves and some economic support. We've got people living with chronic conditions like Kath’s son, so yeah my role is advisory, and to contribute where I can.
Is there any moment throughout your time with CLAN that particularly stands out? If so, why was it impactful?
I’m going to say something quite sad and it’s not related to diabetes, but we did a couple of trips to Pakistan, so again Kate and all her amazing connections. I was invited to speak at the international paediatric meeting, in Lahore, Pakistan, and I then travelled to Karachi, and somehow - I can’t quite remember the chronology - that connected with Kate, and we were welcomed with open arms by Jamal Raza who was the head of the Children’s Hospital in Karachi at that time, and he gave us a tour of the hospital and of course as expected, even though the hospital was undergoing renovations, it was the same thing that you see in so many countries - overcrowding, multiple children in beds et cetera - and then he took us to intensive care and there was a child, a little baby, in intensive care, who had polio. The child had a massive liver and was really sick and I guess - I’m not sure if you know but polio is pretty much eradicated in the world because of immunisation - but the child had come from a region in Northern Pakistan where the Taliban were active, whatever version of the Taliban was there seven or 8 years ago, and so the family were unable to have the child immunised and the child had got polio. The child was obviously extremely sick, maybe six months old, and I did my PhD looking at enteroviruses and Type 1 Diabetes and so I know a lot about enteroviruses and polio as an enterovirus, you know and I’ve read heaps of stuff - my PhD we’d set up a PCR in the lab - like I just knew everything about enteroviruses but I had never seen a child with polio. So to see this child with a vaccine preventable disease in a resource-poor country because of politics because this family had not been able to access immunisation, and I think I’m going to cry now because the next day we went back and the child had died, and nobody should be dying from polio in 2015 or whatever it was. When you look back on the history of polio immunisation it’s an amazing success story, and I say this all the time when patients ask about COVID immunisation, I talk about how I remember the days before pneumococcal immunisation, or even rhinovirus, there are so many immunisations that have really changed the landscape of health. But polio, that drive goes back decades and decades, and to see a child die from polio - I was shattered. I was really, really sad. I’ll never ever forget that picture of that child, big liver, jawned, it’s just tragic. I’m not going to get political but obviously that’s where organisations like CLAN can really contribute in terms of trying to help.
What do you think people ought to know about CLAN?
That’s easy, the incredible work they do. But to be more specific, I think it’s important to understand that CLAN is not an organisation that is about just supplying insulin or supplying drugs, and I think that is something I’ve learnt working with various NGOs or for instance Angie spent a long time working for Life for a Child, and when we were in Vietnam, we certainly came across various NGOs, and there are plenty of people out there that are trying to do good things, including wealthy foundations like Gates Foundation. But I think the thing that I really learnt from Kate and from CLAN is the pillars model, and it’s not about just providing resources, it’s about empowering people, it’s about education, it’s about knowledge, and I think that’s just such an incredibly important… well I guess that the foundation of CLAN is that it’s not just about taking supplies. I remember in the early days, it was actually in Ho Chi Minh City where Kate had organised, in collaboration with Life for a Child, to get some insulin to provide to some families on the day of the club, and the guys turned up with the insulin but they wouldn’t give it to us until we gave them some cash, and I guess that just underlines the corruption that you see in many countries. Kate knew then that it was sort of, not a one off, but perhaps a nice gesture, but to me it was very clear then that you’re not going to make a difference to the lives of children with diabetes if you’re having to deal with these shonky operators who will only give you cash if you’re giving free insulin to children. It was a bit of a cryptic answer to your question but what I was trying to say was that you know the mantra of CLAN is about empowering families and education and that grassroots approach. I know Kate has worked in this area for a long time, she’s worked with NCD Child, and the WHO, and she’s really invested a lot of time in looking at the strategies that work for chronic childhood conditions and the ones that don’t work.
Kate’s also a very strategic thinker - I guess I think in a different way because I’ve just been a doctor all my life and I think about education and so forth, but she really does think at that level of you know how are you going to make a difference to those families. I think about that but in a different way, I’m delivering care and educating families, but she’s just got that really fundamental understanding of how you’re going to make a difference. Things like organising translation of resources, lobbying to get hydrocortisone on the WHO essential medicines list - which was really a big struggle and it’s ridiculous that a medication like that shouldn't be on the essential list - she’s just a very strategic thinker.
Finally, what are your top 3 must-read books?
Well that’s a really hard one. My father is eighty-seven, he lives in Canberra, and I speak to him twice a week for an hour at nine o’clock on the dot on Thursdays and Sundays, and he tells me about what he’s reading, and I’ll never be able to read all that he’s read. He recently read Virginia Woolf’s A Room of One’s Own. It was an amazing book, and I think it is very pertinent to Kate and myself. So the book is about when Virginia Woolf went to college at either Oxford or Cambridge, it’s about how women were treated so differently in the college. The men got a three course meal with excellent food and wine, and the women got... it wasn’t quite bread and water, but they were segregated and whatnot. If you ever get to see there’s a play called A Room of One’s Own which is basically based on the book, but it is to think a hundred years ago the position of women and what women could achieve - I mean Virginia Woolfe obviously did amazing things, setup the Hogarth Press and all sorts of stuff, wrote some amazing books - but I feel very privileged to be in a world where today, even though there’s if you look at Afghanistan and many other places like Pakistan where women still struggle to achieve, we’re incredibly lucky. I grew up believing I could do anything, the days of Helen Reddy - you don’t know her but there you go - so I think my number one book would probably be that because I think it’s a testament to how society has changed so much. Two and three… difficult. Probably my second favourite author is William Boyd, and a book I read recently, I don’t know if you know William Boyd he’s an English author, and the book was called Ordinary Thunderstorms, and it was a story of a man who accidentally happened to be at a restaurant where a man was murdered and he was framed for it - you know the usual type of mystery story - and basically he just went off the grid in London and lived on the edge of the Thames and managed to get away with it for several years so he basically just escaped, and it was a really insightful book about how life today is all about technology and he was able to get by… I don’t know exactly the bits and pieces about how he managed to feed himself and obviously I think he just couldn’t cash money and slept on the banks of the Thames and whatever, and it’s just a reminder that we don’t need technology, even though obviously here we are with technology but you know, I think it’s a great thing sometimes to escape from technology and I look forward to the days when I can go back to New Zealand and I can walk - you know Milford Walk where you don’t get any mobile reception, or the time that I went to Antarctica and I had three weeks with no mobile it was just the best time in my life. I’ll have to get back to you about number three.
Maria Craig’s major research interest lies in childhood diabetes, including studies focused on the prediction and prevention of Type 1 Diabetes. Maria is increasingly concerned about the association between viruses and Type 1 Diabetes, a shared area of interest which is identifiable in her collaboration with the Virology Research Group. She is the principal investigator for the CoRD trial, a world first Phase 1 study, utilising autologous cord blood for the prevention of Type 1 Diabetes in children with islet autoimmunity. Maria is the Medical Director for the Australasian Diabetes Data Network and the President-Elect of the Asia Pacific Paediatric Endocrine Society (APPES), where she acts in a vital role to lead programmes for CLAN.
Heres how our interview went:
Can you tell us a bit about yourself?
I’m a Paediatric Endocrinologist. I work at the children’s hospital at Westmead and St George hospital, and I have academic appointments as Professor of Paediatric Endocrinology at the University of Sydney and the University of New South Wales. I, as a paediatric endocrinologist, I work in a range of endocrine disorders that are passions of CLAN as well as mine. They include Congenital Adrenal Hyperplasia and childhood Diabetes. I spend about 70% of my time now doing research, and my major research interest is actually Type 1 Diabetes, so it’s quite pertinent to this interview, the discussion of the trajectory of knowledge of causes of diabetes in children over recent decades but also one hundred plus years.
Tell us a bit about your role with APPES, and any recent changes coming to light there.
So I’ve been involved with APPES, the Asia Pacific Paediatric Endocrine Society, since the society began in 1999. At that time I was just coming to the end of my training as a paediatric endocrinologist, and my wonderful mentor Professor Chris Cowell asked me to help him setup the first Fellow school, so basically a three day training course for up and coming paediatric endocrinologists across the Asia Pacific region. That first school was held in the Genting Highlands in Malaysia, just immediately before the first APPES international meeting that was held in Kuala Lumpur. That meeting - so I was really the dogsbody, helped set up the training school - but it was a fantastic introduction to disparities in care across the Asia Pacific region, to the range of diseases that are treated across the region, and particularly different prevalence of disease compared to what I saw in my training in Western Sydney. Also it was the start of building some fantastic relationships with colleagues and many of those relationships have continued to this day. So I transitioned from being the helper to the coordinator of this Fellows training school and that continued until about three or for years ago I can’t quite remember, but I did it for a long time and handed the baton over, but I have since transitioned to a role on the APPES education committee as well as being the President Elect of the society, and probably most relevant to this discussion I’ve also been part of the APPES working group on chronic diseases in the region that’s been led by Kate. So I’ve had a longstanding involvement with APPES since it’s inception and I look forward to taking over as the President in a bit over a years time.
In general, what is the achievement or contribution you’ve made that you’re most proud of?
That’s always a really hard question. Look I think in the context of this interview I would actually say my support of endocrine conditions globally, and I guess the two, I know you asked for one, but probably the number 1 highlight is actually, and I was reflecting on this when I was speaking to kate the other day, I first met Kate i think it was in 2008 when Chris Cowell, my mentor, connected me with Kate and said Kate had come back from Vietnam and was really worried about the number of children with Diabetes and how they weren’t able to access insulin, there were a number that were dying, and she felt after the work that she had done in Congenital Adrenal Hyperplasia with other people that she felt children with Diabetes really needed some attention, and of course Chris Cowell knew that my passion was diabetes, he connected me with Kate. I’ll never forget sitting in the back of a taxi going to a meeting at the Australian Institute of Health and Welfare in Canberra, wearing one of my hats, with regard to informing the government on diabetes publications and use of data. Anyway to cut a long story short I went to Vietnam and they had what’s called a club of children with diabetes where they all come together - it was actually at a waterpark in Hanoi - and I was struck by the number of children who were diagnosed with diabetes before 6 months of age, and some of them were quite severely disabled and they were being treated with insulin and the families were struggling to access insulin and obviously at that time also struggling to access blood glucose testing. I said to the head of endocrinology at the time, ‘have you considered doing genetic testing for neonatal diabetes,’ which is a fairly rare form of diabetes that occurs in children under the age of 6 months, but the outstanding feature of this condition is that it can be treated with tablets rather than insulin, which certainly when I was training, nobody ever thought that you could treat childhood diabetes with anything else apart from insulin. But we actually had a, when I was training, a little baby born in our unit who developed diabetes. I can’t remember exactly but it was about two weeks of age and I remember looking after her when I was on call, and eventually her DNA was sent to the UK to Andrew Hattersley, who is a specialist in Exeter, and she contributed to a series of children that were found to have this rare condition - neonatal diabetes - and a whole bunch of those children ended up being able to come off insulin and be treated with tablets which is absolutely phenomenal, almost a miracle at the time. So these families in Vietnam that were struggling to afford and to even access insulin, I managed to connect the head of the department at the time with Andrew Hattersley in the UK who I knew and said ‘can we organise sending DNA for testing’ and to cut a long story short, the paper that’s led to this interview now highlights seventy children diagnosed with this condition in Vietnam who have had their life changed because they no longer need to be treated with insulin. Now obviously I’m not the super smart person that discovered the gene but I do feel quite proud of the fact that I was able to provide that knowledge to the endocrinologist in Vietnam, bearing in mind that in Vietnam at that time they had very little access to you know the level of training that we fortunately have in Australia. So I’m proud of that, but I guess the other thing that I’m proud of is that I have taken on the role as an editor of the International Society for Paediatric and Adolescent Diabetes or ISPAD guidelines as the editor-in-chief and I have been involved in those guidelines again for more than 10 years but it’s a real honour to be taking on that role as the editor-in-chief but it has also enabled me to really be a voice for involvement of people from the Asia-Pacific region as well as the rest of the world and I’ve really been an advocate for ensuring that this is not a series of guidelines that apply to children that live in purely white wealthy suburbs whether it’s in Australia or the UK or the US, and make sure that the guidelines are really focussing on children who live with diabetes in all sorts of settings including very resource poor settings. And one of the chapters in those guidelines is specifically about genetic forms of diabetes such as neonatal diabetes.
What inspires you to do what you do?
Now that’s a good question, I mean I love what I do and it’s very rewarding. I love being able to put my knowledge into action but it’s multi-layered because I absolutely enjoy the interaction with families, even in the context of COVID where it’s all tele-health or over the phone, people asking me questions being able to empower families and educate them - and that’s not just in Sydney but also when I’ve travelled overseas doing those clubs in Vietnam or other places - actually being able to educate people. But I also absolutely enjoy research - I feel like all of the PhD and Honours students that I’ve supported that have gone onto bigger and better things, some of them have ended up as endocrinologists, I feel like it’s one big family that I’ve looked after and I think I’ve been fortunate to have been born with half a brain and live in a country where we have access to really outstanding education and have a really good public health system and I just live by the, you know you have to give back, so I’ll keep doing that until I can’t do anymore. It’s just the cycle of life - people have looked after me, people have mentored me, people have really in this structure of medicine I’ve been so fortunate that I’ve had amazing mentors and amazing support, so I just feel like it’s my job to do the same and give back.
What is the driving force behind how closely you work with the diabetes community? What attracts you to this cause?
So that’s sort of a little bit of chance. When I was a seventeen year-old medical student at the University of Melbourne, a university student who was a few years above me came up to me out of the blue - I must’ve been standing around looking bored or something I don't know - she came up to me and said ‘are you interested in going on a diabetes camp?’ and I had done quite a lot of leadership when I was at school (Duke of Edinburgh et cetera) and didn’t know anything about diabetes at that time I was in first year medicine and I was struggling to keep up with all the lectures, but I said yes and I went on this camp and I was absolutely flabbergasted about how these children were having to prick their fingers and inject themselves or have someone else inject them and measure their food and that really ignited a passion in me to why does this happen? I kept doing the camps right through medical school and I ended up setting up a - so those camps at the time were for younger children - so I ended up setting up a camp for teenagers called ‘The Injectors’ - it’s a pretty daggy name really but the group was called ‘The Injectors’ - and we would go camping, like proper camping in tents with adolescents and just trying to empower them to manage their diabetes outside their comfort zones, away from their parents, teaching them about their diabetes. I knew I wanted to do paediatrics, but then when I finished my paediatric training that’s how I ended up in diabetes. So the passion is really I guess from those early days of seeing what a difficult disease this is but at the same time how amazing it is that some young people can demonstrate incredible resilience and manage with the burden of living with Type 1 Diabetes. In those days you had to prick your fingers, obviously we have better technology now, we didn’t have insulin pumps, we didn’t have the knowledge that we have now about preventing complications but nevertheless I was in awe of the resilience of these young people and I guess that ignited my passion to really understand the cause and that’s really one of my major areas of research - the cause of Type 1. There’s obviously this small group of children with the genetic form of early onset diabetes or neonatal diabetes but for the one in three-hundred children in Australia and in many parts of the world living with Type 1 if we can really understand the cause then we can move towards prevention, and possibly a cure as well.
We’d love to learn more about your work with the Diabetes community in Vietnam - tell us a bit about it.
It struck me many years ago, before I’d been to Vietnam, that if you were well off and your family could afford the best technology and you went to a good school and there was good support, buy in large, you did quite well with type 1. Part of that also probably relates to family support - if you have a nuclear family - if you’ve been brought up… you know all the psychological determinants of health - bonding and those sorts of things - then you will manage well, and I’ve certainly looked after children now with Type 1 who’ve been diagnosed in the first years of life who are now finishing or have finished school and their coping skills, their resilience are frequently related to socioeconomic status. That is not to say it is universal, there are certainly young people who come from high socioeconomic status backgrounds who don’t cope, but I do think if you’ve got a nuclear family, you’ve got good support, you’re taught resilience from a young age, you’ve got a good network of family and friends, that you get on with things. And of course then you can also afford technology: the 30% of people in Australia who have private health insurance can afford insulin pumps and insulin pumps have revolutionised diabetes management for the last seventeen, eighteen years and probably twenty years when you look at countries, and if you live in Boston or Stanford or somewhere like that you do very well, but if you live in the middle of America you don't do particularly well, or out of the big cities in Australia and in answer to your question, if you extrapolate that to countries like Vietnam, I was absolutely flabbergasted by the concept that insulin wasn’t provided by the government. You know we have the PBS system here where nobody can’t afford insulin in Australia, everyone with Type 1 Diabetes gets a healthcare card, so the supply of insulin is six dollars, even though for some families that still is a lot of money it’s affordable, and there are ways around if they can’t afford it, whereas in Vietnam there are huge obstacles to getting insulin. Families have to go to the hospital once a month to get it, the prices are high, they’d have to wait for hours in the queue, so you know there are real issues with equity in countries that have a very different health system to ours, a very stretched health system. The other thing that struck me and I guess this has been my passion with regard to educating not just the paediatric endocrinologists and paediatricians in training but also setting up workshops to train allied health professionals like diabetes educators, is the fact that the knowledge of the staff working with children with diabetes was sometimes suboptimal and part of that was related to their training, part of that was related to the fact that in countries like Vietnam Type 1 Diabetes isn’t so common and when you manage common things you get good at it quite quickly but when you manage something that’s less common you don’t manage it as well, and I guess that gets back to the neonatal diabetes. They saw a lot of diabetes in young children and they just weren’t aware that it could be treated in a different way with tablets.
Does that answer your question? There’s so much to say about health systems in other countries and I think power is knowledge and so I can feel I can make the biggest difference by supporting training of doctors and allied health professionals, and working with CLAN you know through their grass roots approach, through empowering families, through translating resource materials such as the diabetes manual that CLAN has supported, so that families do actually have that knowledge to be able to manage their child with this chronic condition.
The project that I mentioned with the paper that stimulated this interview, that’s actually been going on for some time. After that first trip to Hanoi with Kate, I had a medical student… so wearing my university hat I had Honours or what are called ‘Independent Learning Project’ students come and work with me really every year since the program started about twenty years ago, and I had a student approach me who herself was a child of Vietnamese parents who had come over, and she was really interested in doing a research project with me and I invited her to come to one of these club meetings in Hanoi and Ho Chi Minh City and it was fantastic for her to be able to go back in that context - see how lucky she was thanks to her parents. She contributed to writing up the first series of cases of children in Vietnam. I think that was 2011 that that paper came out and it was really the first time that there had been a publication from that unit in Vietnam showing that about ten percent of their population of children with diabetes had this condition called neonatal diabetes - the genetic form - and by that stage it wasn’t 70 cases it was a smaller number, I can’t remember maybe 12 or 13, that was the first step in this collaboration with this team, in particular Dr Zung from Hanoi who now runs the unit. And then I’ve been going back and forth, helping them to setup their pump program, helping them with education, training of their junior doctors, run a lot of educational meetings in different formats in both the North and the South of Vietnam over the years, and then they’ve been talking about writing up this larger series sending DNA to Exeter to have the patients analysed, obviously doing their bits and everything which takes time. I’ve helped them put together the manuscript obviously because training in English, particularly in written English, and medical writing is a huge challenge when you come from a country that doesn’t have an english-based language or a Latinate language I guess is the term isn’t it. So that’s this project that’s come to fruition with the publication of this manuscript and I’m really, really incredibly proud to have supported the team there, to have this published in a very good journal, because obviously you’re always on back-foot when trying to publish in a medical journal where you don’t come from the US or the UK or Australia and English is not your first language, making sure that you followed scientific methods. So that’s really the first of I think quite a number of - well not the first because the first paper as I said was 2011, but I really look forward to ongoing collaboration with them and supporting them to really do the best thing for the doctors in terms of their careers, because having publications is important, but more importantly publishing data on patients, obviously it’s deidentified, but publishing data showing the burden of disease, and in this case it’s one of the largest series within a city of children with neonatal diabetes, highlights to the Ministry of Health in Vietnam. I know I have a connection to the Ministry of Health - and I’m not blowing my own trumpet here but I was awarded their medal some years ago so they know me - and so for Joseph and his team to have a paper with my name on it that says ‘look at the burden we have of disease of children with neonatal diabetes’ - that is very powerful for them then going to the Ministry of Health and saying ‘we are not adequately resourced, these children need access to insulin,’ or you know other medications et cetera.
Also within Vietnam it helps doctors who are working within Huế - I’ve been there with Kate - or in Ho Chi Minh City, and in other provinces, it increases their awareness. I think also it does provide some inspiration to the next generation of doctors who are training and they see that this is an important area and ‘look we’ve got this great leadership from people like Dr Zung in Hanoi and international collaborations,’ I think that’s a win-win situation.
What inspired you to start working with CLAN?
It was that connection with Chris Cowell who is a paediatric endocrinologist - he’s now the Director of Research at the Children’s Hospital - I don’t know I think sometimes fate just delivers us things and you meet people and they like you and see you have potential. I met him on my first day as a registrar in I think it was ‘93, and he just for whatever reason saw that I had some potential and so mentored me, and you know it was sort of on and off but he was always looking out - he didn’t supervise my PhD it was someone else - but he was always looking out for me and it was that link when Kate contacted him and said ‘look I’m worried about the situation with diabetes in Vietnam, do you know anyone who’d be interested?’ and Chris put my name forward. Of course then I met Kate and you guys don’t need me to tell you she’s an incredibly inspiring individual, incredibly passionate, and we just hit it off. It’s been an incredible working relationship with Kate and friendship and I just so believe in what she’s doing. I spent a lot of time looking at the work that she’s done, the resources she’s put together, talking to her about the rationale for why she does what she does and the way she does it, the pillars, the empowerment of families, she’s a very strategic thinker. I’m just very lucky to have her as a friend and as a colleague.
What is your role within CLAN?
I’m on the committee. I think I’m an honorary life member or something like that. I’m on the committee - I’m an ordinary committee member, I’m not an office bearer. I provide advice to CLAN, and as you know CLAN has people with a mixture of expertise, you have Angie Middlehurst who’s an enormously experienced diabetes educator with a long track record of working in resource poor settings. I’m currently the only paediatric endocrinologist in the group but you know we’ve got obviously a fantastic team including yourselves and some economic support. We've got people living with chronic conditions like Kath’s son, so yeah my role is advisory, and to contribute where I can.
Is there any moment throughout your time with CLAN that particularly stands out? If so, why was it impactful?
I’m going to say something quite sad and it’s not related to diabetes, but we did a couple of trips to Pakistan, so again Kate and all her amazing connections. I was invited to speak at the international paediatric meeting, in Lahore, Pakistan, and I then travelled to Karachi, and somehow - I can’t quite remember the chronology - that connected with Kate, and we were welcomed with open arms by Jamal Raza who was the head of the Children’s Hospital in Karachi at that time, and he gave us a tour of the hospital and of course as expected, even though the hospital was undergoing renovations, it was the same thing that you see in so many countries - overcrowding, multiple children in beds et cetera - and then he took us to intensive care and there was a child, a little baby, in intensive care, who had polio. The child had a massive liver and was really sick and I guess - I’m not sure if you know but polio is pretty much eradicated in the world because of immunisation - but the child had come from a region in Northern Pakistan where the Taliban were active, whatever version of the Taliban was there seven or 8 years ago, and so the family were unable to have the child immunised and the child had got polio. The child was obviously extremely sick, maybe six months old, and I did my PhD looking at enteroviruses and Type 1 Diabetes and so I know a lot about enteroviruses and polio as an enterovirus, you know and I’ve read heaps of stuff - my PhD we’d set up a PCR in the lab - like I just knew everything about enteroviruses but I had never seen a child with polio. So to see this child with a vaccine preventable disease in a resource-poor country because of politics because this family had not been able to access immunisation, and I think I’m going to cry now because the next day we went back and the child had died, and nobody should be dying from polio in 2015 or whatever it was. When you look back on the history of polio immunisation it’s an amazing success story, and I say this all the time when patients ask about COVID immunisation, I talk about how I remember the days before pneumococcal immunisation, or even rhinovirus, there are so many immunisations that have really changed the landscape of health. But polio, that drive goes back decades and decades, and to see a child die from polio - I was shattered. I was really, really sad. I’ll never ever forget that picture of that child, big liver, jawned, it’s just tragic. I’m not going to get political but obviously that’s where organisations like CLAN can really contribute in terms of trying to help.
What do you think people ought to know about CLAN?
That’s easy, the incredible work they do. But to be more specific, I think it’s important to understand that CLAN is not an organisation that is about just supplying insulin or supplying drugs, and I think that is something I’ve learnt working with various NGOs or for instance Angie spent a long time working for Life for a Child, and when we were in Vietnam, we certainly came across various NGOs, and there are plenty of people out there that are trying to do good things, including wealthy foundations like Gates Foundation. But I think the thing that I really learnt from Kate and from CLAN is the pillars model, and it’s not about just providing resources, it’s about empowering people, it’s about education, it’s about knowledge, and I think that’s just such an incredibly important… well I guess that the foundation of CLAN is that it’s not just about taking supplies. I remember in the early days, it was actually in Ho Chi Minh City where Kate had organised, in collaboration with Life for a Child, to get some insulin to provide to some families on the day of the club, and the guys turned up with the insulin but they wouldn’t give it to us until we gave them some cash, and I guess that just underlines the corruption that you see in many countries. Kate knew then that it was sort of, not a one off, but perhaps a nice gesture, but to me it was very clear then that you’re not going to make a difference to the lives of children with diabetes if you’re having to deal with these shonky operators who will only give you cash if you’re giving free insulin to children. It was a bit of a cryptic answer to your question but what I was trying to say was that you know the mantra of CLAN is about empowering families and education and that grassroots approach. I know Kate has worked in this area for a long time, she’s worked with NCD Child, and the WHO, and she’s really invested a lot of time in looking at the strategies that work for chronic childhood conditions and the ones that don’t work.
Kate’s also a very strategic thinker - I guess I think in a different way because I’ve just been a doctor all my life and I think about education and so forth, but she really does think at that level of you know how are you going to make a difference to those families. I think about that but in a different way, I’m delivering care and educating families, but she’s just got that really fundamental understanding of how you’re going to make a difference. Things like organising translation of resources, lobbying to get hydrocortisone on the WHO essential medicines list - which was really a big struggle and it’s ridiculous that a medication like that shouldn't be on the essential list - she’s just a very strategic thinker.
Finally, what are your top 3 must-read books?
Well that’s a really hard one. My father is eighty-seven, he lives in Canberra, and I speak to him twice a week for an hour at nine o’clock on the dot on Thursdays and Sundays, and he tells me about what he’s reading, and I’ll never be able to read all that he’s read. He recently read Virginia Woolf’s A Room of One’s Own. It was an amazing book, and I think it is very pertinent to Kate and myself. So the book is about when Virginia Woolf went to college at either Oxford or Cambridge, it’s about how women were treated so differently in the college. The men got a three course meal with excellent food and wine, and the women got... it wasn’t quite bread and water, but they were segregated and whatnot. If you ever get to see there’s a play called A Room of One’s Own which is basically based on the book, but it is to think a hundred years ago the position of women and what women could achieve - I mean Virginia Woolfe obviously did amazing things, setup the Hogarth Press and all sorts of stuff, wrote some amazing books - but I feel very privileged to be in a world where today, even though there’s if you look at Afghanistan and many other places like Pakistan where women still struggle to achieve, we’re incredibly lucky. I grew up believing I could do anything, the days of Helen Reddy - you don’t know her but there you go - so I think my number one book would probably be that because I think it’s a testament to how society has changed so much. Two and three… difficult. Probably my second favourite author is William Boyd, and a book I read recently, I don’t know if you know William Boyd he’s an English author, and the book was called Ordinary Thunderstorms, and it was a story of a man who accidentally happened to be at a restaurant where a man was murdered and he was framed for it - you know the usual type of mystery story - and basically he just went off the grid in London and lived on the edge of the Thames and managed to get away with it for several years so he basically just escaped, and it was a really insightful book about how life today is all about technology and he was able to get by… I don’t know exactly the bits and pieces about how he managed to feed himself and obviously I think he just couldn’t cash money and slept on the banks of the Thames and whatever, and it’s just a reminder that we don’t need technology, even though obviously here we are with technology but you know, I think it’s a great thing sometimes to escape from technology and I look forward to the days when I can go back to New Zealand and I can walk - you know Milford Walk where you don’t get any mobile reception, or the time that I went to Antarctica and I had three weeks with no mobile it was just the best time in my life. I’ll have to get back to you about number three.
