You are currently browsing the category archive for the ‘Awareness’ category.
Last week, I spent three and a half days in Paris at the Advanced Technologies and Treatments for Diabetes (ATTD) international conference. It was the 10th ATTD meeting, and the first that I had attended. I have been to my fair share of diabetes conferences both here and around the world, but this one was definitely different. The narrow focus on technology meant that most of the attendees shared an affinity for tech-geekiness.
I was there as part of the Roche Blogger Networking #DiabetesMeetup event, (my disclosures are at the end of this post), which was a remarkable day with about 40 bloggers from across Europe. Lots more about that in coming days.
As I sat in sessions and wandered around the exhibition hall, I found myself becoming increasingly uncomfortable. The combination of being enthused, enthralled and excited (alliteration!!) at new tech and treatment advances sat trickily alongside nagging and constant reflection about the categorically un-level playing field that is diabetes around the world.
How could I happily be sitting there, hearing about automated insulin delivery devices, the value of CGM use, implantable CGM sensors that last for 90 days and big data when I had just spent weeks imploring people to donate to Spare a Rose, Save a Child? I am an ambassador for Insulin for Life Global and despair at the thought that people are dying because they can’t access insulin. And even in first world countries, access to insulin is, for some, not a given, and the thought of accessing the sorts of technologies I was hearing about may as well be a fairy-tale.
The divide between those of us in the room – those able to use the technology – and those for whom access to any sort of diabetes tech was gaping and seems to be getting bigger by the minute.
I walked out of a brilliant session about automated clinical decision support systems. It was morning tea time, so there was a break in sessions and I thought I’d find a quiet corner to try to get my head straight about how I was feeling. I looked up and there was Professor Alicia Jenkins. I knew that she was just the person to help me sort myself out!
Alicia is an Australian endocrinologist. She is a remarkable clinician, researcher and one of the best presenters on diabetes I have ever heard. Plus, she is a lovely, lovely person. Alicia is also the President of Insulin for Life Global.
I mentioned to her how uneasy I was feeling and she agreed, but with typical (and welcome) Alicia reflection, she helped me find some perspective. She reminded me that most people at the conference are very conscious of the divide, and that even while talking about the latest advances, there was still a lot of talk about access and reimbursement. There was acknowledgement that the divide is real and needs to be addressed. I looked at her – someone who is such a huge advocate for, and expert in, technology and new treatments – and realised that, actually, we can be across both aspects of diabetes care; that just because we are excited about the latest (and expensive) technologies doesn’t mean we don’t care and want to do something to help improve access of basic diabetes supplies.
By the end of the conference, on the very long trip home, I kept thinking back to our conversation. I realised that as much as it would make things simpler, I just can’t compartmentalise my own diabetes situation and how I feel about access for others. I struggle with this, because one of the really important things for me to have done all the time I’ve worked in the diabetes space has been to separate my own experience from others’.
But in this instance I can’t just leave it at ‘this is my experience and this is someone else’s’ and I think that may actually be a positive. I do find it uncomfortable. I feel guilty that I can afford and access whatever I need when so many cannot. I feel it in Australia amongst my peers and I feel it when I read about those in other countries. (Really, you should read the brilliant profiles T1 International are sharing at the moment, which give a beautifully (and sometimes harsh) personal perspective to access issues.)
I struggle with my privilege and have a constant feeling that I am not doing enough. But these feelings are a good thing. Because I can always do more. I SHOULD always do more.
I will never stop writing about these issues here and elsewhere, or talking about them. I will keep putting my money where my mouth is, because words are not enough. And I will keep advocating, using my voice and working with people trying to make a difference, until there is no difference at all between what we can all access.
Because it’s still February, I would like to urge you again to please, if you can, make a donation to the Spare a Rose campaign. For the cost of one rose (about AUD$6), you can provide insulin for a month to a child in a developing country. (Also, I should mention that last week, I was invited to join the Spare a Rose, Save a Child team; an invitation I accepted immediately.)
My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.
Last Friday night, I was at a work dinner. The event followed a very full day of meetings and as we sat down for our meal, I was concerned that my brain was so drained I wouldn’t be able to focus on the guest speaker.
However, when he started, the speaker (one of Australia’s leading diabetes health professional experts) gave an eloquent and articulate talk about the state of diabetes in Australia and the world.
He spoke for a relatively short time – about 15 minutes – and then sat back, continuing to chat with other people seated around him.
He noticed my CGM on my arm, but didn’t say anything. However, later on as he was speaking about realities of living with diabetes, he stopped and said directly to me: ‘You know this better than anyone else. Why am I talking?’
I was grateful for the acknowledgement, but I did want to hear more from him. One of the things he focussed on in his talk was about how HCPs often don’t truly understand diabetes or how to speak to people with diabetes. He identified stigma as a real issue for people living with diabetes – and how the way diabetes is presented and spoken about in the media is damaging. But several times, he came back to his concerns about healthcare professionals and their approach to dealing with people with diabetes.
‘You are so right,’ I said, agreeing with him. ‘I’ve found – and have heard from many others – that often HCPs don’t get diabetes at all. There is this weird concept that diabetes is a matter of insulin (or other meds) – food – check BGL – adjust accordingly. And go! It’s not that easy. It’s really not.’
He nodded at me. ‘You know; I think we made a really big mistake about 30 years ago when we started saying that people with diabetes can live a normal life…It’s not true.’
I’ve not been able to stop thinking about that comment all weekend. It was startling to hear the words, but I think that was because I realised straight away that it was true.
When I was diagnosed, I was told that diabetes would not prohibit me from living a normal life. Sixteen years ago when I started using a pump, I was told that it would make me feel normal again. When I started on CGM, I was told that I would feel normal when I could easily see and adjust my glucose levels. When I’ve started any sort of new eating plan, I’ve done it because I’ve heard that it makes people feel more normal.
I spend so much time convincing people – convincing MYSELF – that diabetes hasn’t prevented me from living a normal life. I check off on my fingers the things I’ve done, one at a time proving that I can do anything, I have done everything. I am normal! Look!! I work; I travel; I have a kid; I eat what I want; I stand up in front of people and talk; I write and get published. Look how normal my life is!
But the truth is – it’s not normal. My life is not normal. And it’s disingenuous to suggest otherwise.
It’s not normal to for my body to not produce insulin. It’s not normal to have to think about every piece of food I put in my mouth, (how many carbs are in there? Are there too many? Are there not enough? What is my BGL right now and do I need more/fewer carbs?) It’s not normal to be terrified that I am going to develop complications that will be debilitating, limiting, scary. It’s not normal to be so worried about my health all the time – to be so focused on my health all the time. It’s not normal to have sensors and pumps and devices stuck to my body as I try to mimic a human organ. And it’s not normal to think this is normal
Humans are incredibly adaptable. We modify and make changes to suit to new environments, circumstances, challenges.
And when we are diagnosed with a chronic health condition that impacts on pretty much every part of our life, we adapt. It may become our new normal. But it’s not normal.
I agree with the esteemed professor from the other night. It was a huge error to start saying that we can live a normal life with diabetes. It undermines, and negates, the constant effort we need to put in to appear normal and to be healthy; it makes us feel guilty – and incompetent – when diabetes does stand in the way. It makes us fell less than we should when we need to seek special consideration or dispensation to help manage situations.
I have diabetes. My life is not normal. And it doesn’t diminish me in any way to admit that.
‘Why do you even care what’s happening in America? It doesn’t affect you, does it?’
I’ve been astounded to hear a few people ask me this question after finding out that the kidlet and I participated in the Women’s March a few weeks ago, or after hearing me speak about the current situation in the US with the Trump Administration threatening to repeal the Affordable Care Act, and allowing insurers to discriminate against those with pre-existing health conditions.
I care a lot about what is happening in America at the moment. Without a doubt, my main focus is what is going on with healthcare and insurance, (however today, I am stunned, dismayed at Betsy DeVos’ confirmation as Education Secretary, but that is mostly because I cannot believe that someone who thinks guns have a place in schools ‘because of, you know, grizzlies’ is in charge of education).
Does it affect me directly? Well, probably not. But it is incredibly naïve of us to think that what happens in the US is completely irrelevant here in Australia. We know our politicians look to the US for policy direction. Our new Health Minister, in his maiden speech to Parliament, put forward the case for the adoption of a healthcare system more in-line with the US-system.
Of course what is going on in America affects us, but, actually, that’s not the point.
The real point is that I care because it’s about people. Not only that, it’s about the most vulnerable people. And like it or not, people with chronic health conditions are vulnerable. We are high-level users of healthcare, we face more discrimination and we cost more to the system. We can be hit where it hurts: easily and unfairly.
Of course, within this group there are some more vulnerable than others.
In the same way, I’ve had people ask me why I care so much about insulin access around the world, which seems like such a callous thing to even think, much less say out loud, when you remember that the life expectancy for a child diagnosed with type 1 diabetes in sub-Sahara Africa is 12 months. I actually still struggle to get my head around that really.
I care because I am a global citizen and I care because my social responsibility is to those less fortunate. I care because when my brothers and sisters around the world are struggling because they can’t access diabetes care, it hurts us all. I care because when I hear that instead of protecting the most vulnerable – as they should – governments are building walls (no pun intended) to make it more difficult, more frustrating and more tiring, the response should never be ‘oh well’, it should be ‘What.Can.I.Do?’ I care because diabetes is hard enough without having to fear being turned away from A&E or from other treatment. I care because no one should die because they can’t easily and affordably access a drug that has been around for 95 fucking years.
Of course I marched last month and you can bet that I will be doing it again. And you bet that I will be standing alongside my friends in the US as they fight one of the hardest battles they’ve ever faced just to be able to access healthcare, and my friends from around the world too as they fight access issues. And I will continue to make donations to charities helping those who cannot access insulin and be an Ambassador for Insulin For Life Global as they continue their excellent and necessary work.
But if you really think that it’s all too far away, so it won’t touch us, then perhaps you might like to do something to help people closer to home. As someone delicately reminded me last week, it is not only people in developing countries who struggle to access diabetes healthcare and drugs, and whose outcomes are far, far poorer than those of us living firmly inside a privilege bubble.
In Australia, diabetes is more than three times more common among Aboriginal people than among non-Aboriginal people. Hospital rates for diabetes-kidney complications for Aboriginal and Torres Strait Islander people is ten times higher than among non-Indigenous people. The rate of gestational diabetes in Indigenous women is more than twice the rate among non-Indigenous people.
Get involved with or make a donation to an Australian-based charity if you would prefer to do something to help those closer to home.
We should all care because when others are disempowered, it means they are not able to get the best care or expect the best outcomes. And we do something because we can; and if we can, we should. That is what being socially responsible is all about.
Yesterday, on her first day of school, the kidlet’s English class was about autobiographies. So, we had a long chat about some biographies and autobiographies we’d read – and ones we wanted to read – and why they are a really important way for people to share the stories of their life.
Story telling is one of the most powerful ways to record events, emotions and life experiences. Others who may be going through similar experiences can feel great comfort knowing that others have not only lived through certain situations, but stuck around to tell the story! And it is also a fabulous way to share stories with those not familiar with different places, circumstances or surroundings.
Our stories have the ability to inspire, offer an opportunity to learn, and help make sense of things around us.
So, it took me no time at all to respond with a resounding ‘YES!!’ when I was contacted by Anna Sjöberg from Anna PS and Sofia Larsson-Stern from Diabetesia, asking me to be in their book about people living with type 1 diabetes.
The end result of their hard work is a fabulous book – ‘We can, want and dare …and we have type 1 diabetes!’ – and it features people from all over the world telling their stories of life with type 1 diabetes.
When putting together the book, Anna and Sofia wanted to provide real-life stories from people with type 1 diabetes from all walks of life: from kids and teens
(such as this one who is, quite simply, AMAZING!) to adults doing all sorts of amazing extraordinary, and every-day things. There is a Brooklyn-based chef, an incredible young advocate from Sweden and another Swede whose Instagram profile describes him as a Multisport Team Ninja Warrior! Oh, and a Melbourne blogger and activist.
The books was launched it its original Swedish-language version last year on World Diabetes Day and the English-language version has just been launched and is now available.
This book is not just for people with type 1 diabetes, although, with its stories of hope it certainly would be a wonderful thing to give someone newly diagnosed! It is also for friends and families of those living with type 1, and people who really have no significant connection to type 1 diabetes, because it provides an understanding of the complexities of the condition that we live with and offers a very personal insight into life with type 1.
GIVEAWAY GIVEAWAY GIVEAWAY
I have three copies of ‘We can, want and dare …and we have type 1 diabetes!’ to give away to Aussie-based readers of Diabetogenic, thanks to the team at Anna PS. Just click here and send me a message telling my why you would like a copy. Keep it short – brevity is key here!
I was invited to provide my profile for the book and received no payment for my contribution. I will receive a signed copy of the book for my bookshelf, though, and can’t wait to see it!
Our daughter starts back at school today. It’s her first day at secondary school – a significant day, and as I waved good bye to her this morning, watching her walk into the school theatre for morning briefing, I realised that this is one of those really big transitions in a person’s life. And a parent’s life too…
I managed to wait until after the Principal’s address to parents, and after leaving school grounds to get a little teary, so I’m calling the morning a win all around!
As I drove into work, I thought about all the things we’d done to get ready for the day. We’d attended information sessions, gone on school tours, enrolled in cello lessons, decided which language to learn, ordered and collected text books and stationery, organised a public transport pass, learnt how to use the school’s intranet, done a few practice school runs on the tram and many other things that we did as we thought of them.
The check list we were working from seemed endless and we kept adding tasks to it. But we made it, and by last night, her schoolbag was packed and she was ready for her first day.
But our story is common and all families with children starting at (or back at) school have done similar things. However, there are some families who have a whole lot more to do than just make sure they have the right coloured pencils and appropriate snacks in the lunchbox.
There are over 11,000 preschool and school-aged children here in Australia with diabetes, and they – along with their parents – face different and extra challenges preparing for their first days of school. In addition to the things I’ve mentioned above, they have another checklist that needed to be dealt with. The diabetes at school checklist.
While they are packing school bags with books and pencils and lunch for the day, they are also building hypo kits to be delivered throughout their child’s school. They will probably have spent some – maybe considerable – time with teachers explaining some diabetes basics and what to do in the case of a diabetes emergency.
It’s likely that their child’s healthcare team will have been involved in preparing some sort of management plan for the school, outlining how to support the child during the school day, with extra attention given to activities such as sports days, PE lessons, camps and excursions.
Possibly, their school will have undertaken some formal training, such as the School Seminars offered by Diabetes Victoria. They should have received a copy of Mastering Diabetes and hopefully shared the school-relevant information with their child’s teachers and other school staff.
It’s a lot to think about. And it’s understandable why many parents feel a lot of concern, especially when you consider that there is no standard requirement by schools when it comes to supporting children and adolescents with diabetes.
And, quite frankly, that’s not good enough.
Since returning from holidays this year, the majority of my work has centred around diabetes and schools, and today Diabetes Australia launched a new report calling for a systematic, nationally consistent approach to supporting children and young people with diabetes in the school setting. Children and adolescents with diabetes have a right to fully participate in all school activities, but to do so does require training and commitment.
It’s time to move away from the mixed-bag, approach that is in place now, where it seems that luck determines if a school is well prepared and teachers are well trained. Kids with diabetes deserve much, much better.
In my alternate reality, the alternate fact is living with diabetes is easy-peasy-lemon-squeezy.
In my alternate reality, the alternate fact is living with diabetes is affordable.
In my alternate reality, the alternate fact is everyone around the world can access free insulin and other diabetes supplies.
In my alternate reality, the alternate fact is there are enough HCPs who understand diabetes.
In my alternate reality, the alternate fact is that person-centred care is real, not just three words in a row.
In my alternate reality, the alternate fact is that diabetes stigma does not exist.
In my alternate reality, the alternate fact is diabetes technology never, ever fails.
In my alternate reality, the alternate fact is fresh, healthy foods are easily and affordably accessible for all.
In my alternate reality, the alternate fact is everyone with diabetes has the support they need.
In my alternate reality, the alternate fact is that nobody dies from diabetes.
In my alternate reality, the alternate fact is there is no judgement in diabetes. Ever.
In my alternate reality, the alternate fact is diabetes is not a punchline on SNL.
In my alternate reality, the alternate fact is reported accurately and sensitively by the media.
In my alternate reality, the alternate fact is diabetes is spoken about with inclusive, empowering language.
In my alternate reality, the alternate fact is coffee is a food group. And so is Nutella.
In my alternate reality, the alternate fact is my favourite DOC people lived on the other side of the street, not the other side of the globe.
In my alternate reality, the alternate fact is diabetes conferences are organised by people with diabetes.
In my alternate reality, the alternate fact is true engagement with people with diabetes is not tokenistic, but rather intrinsic, coordinated and meaningful.
In my alternate reality, the alternate fact is insulin pump lines never fail.
In my alternate reality, the alternate fact is children with diabetes have the same opportunities as children without.
In my alternate reality, the alternate fact is my CGM always reads 5.5.
Actually, in my alternate reality, the alternate fact is that I don’t have diabetes.
Alas, there is no alternate reality. And there are no alternate facts.
With millions of people across the globe, I marched for women’s rights on Saturday. Alongside my beautiful daughter – who is growing into a fearless and fierce activist herself – I stood in solidarity with my sisters from all continents of the world, as we called for protection of our rights.
It was beautiful in Melbourne – a true mid-Summer day with stunning clear blue skies and a hot sun overhead. We stood on the steps of the State Library – my favourite place in the city – and listened as women from all walks shared their stories and urged us to stand up, rise up and never give up.
After a while, the kidlet and I walked to the back of the crowd, looking for some shade. We found a park bench and she looked for a vantage point to get a look at the rally and wander around to take some photos as I sat down at the other end of the bench to calibrate my CGM.
I quickly pricked my finger and squeezed blood onto the strip. When the number came up, I entered it into the Dex app on my phone.
The woman sitting next to me on the park bench smiled over at me. ‘Me too,’ she said, holding up the bag of jelly beans she was eating.
I beamed back at her. ‘Are you okay? The heat isn’t helping, is it?’
‘I’ll be fine. Just need a few minutes before the march starts. I’ll be okay.’
I smiled again and stood up. ‘We always are, right? Enjoy the march.’
‘I will,’ she said. ‘And you too. One foot in front of the other.’
I nodded. ‘It’s the only way.’
I walked over to the kidlet and we made our way back through the crowd.
Today is my first day back at work. I spent the weekend preparing for the day by sitting in the sunshine, drinking coffee, deadheading rose bushes and switching back on the part of my brain that thinks about work. And remembering how to walk in high heels.
The new year looms ahead. It’s huge. There are things to finish from last year and lots of new projects waiting to begin. And starting fresh with a clean slate and thinking strategically about how to get things done is important.
I don’t really do New Year’s resolutions. I’m lousy at committing to anything remotely healthy, so there is no point in trying to promise to do something that I’ll do for two days, then stop doing and then feel bad at myself for not doing it anymore.
I don’t really want to use the New Year to focus on diabetes by concentrating on particular tasks or specific measures. Outcomes seem to be organic and setting goals, while a noble gesture, often lead to disappointment. Feeling like a failure is not how I want to begin the year!
But I do like the idea of embracing the New Year and cracking open its spine, revealing clean pages and new beginnings.
Australian writer and publisher, Mia Freeman, shared that last year, she came up with a word that would help draw her attention to her plans for the year ahead, and has done the same for this year.
I like this idea – the thought of having some sort of directive that would be an overarching theme for decision making and planning, and would, hopefully, mean that I ended the year feeling a success rather than just a shattered and weary mess.
Because I have found myself pretty exhausted at the end of the last few years. I know everyone is – we get to a point where we are just done and need a break. I felt as though I was burnt out with life when I went on leave, and the much needed holiday was about getting back to a place where I felt I could tackle what lay ahead.
With this in mind, I wanted my word to help me avoid that burn out, so that come the end of the year, the exhaustion I felt was not so overwhelming.
So, I spent some of the time we were in New York auditioning words, trying them out, rolling them around on my tongue and hearing them in my mind, thinking what they could mean for me throughout 2017. As I walked around the snowy streets, I projected how I wanted to feel at the end of this year and what I would need to get there.
The word I have settled on is pause.
As soon as I said it, I knew it was the right word. I wrote it down, over and over, thinking about how it could shape and help plan my year. I wrote it on scraps of paper and shoved them into my purse and handbag to remind me. And the minute I walked into my office this morning, I wrote it on a post-it and stuck it to my wall.
Pause doesn’t mean that I will be stopping anything I’m doing. It doesn’t even necessarily mean I’ll be cutting back. But it does mean that before committing to anything new, continuing with something old or exploring different ways of doing things, I will pause and think about why and how I am doing it.
The tendency to simply say yes to everything serves no one – the results are me not doing things as well as I might like or feeling disappointed with the end result.
I also am seeing how I can adapt the word to suit my diabetes management. I think that too often, I am on autopilot, not really thinking about what it is that I am doing. To pause means giving meaning to actions, attention to decision making and focus to the way I choose to manage my diabetes. Jumping on a bandwagon because it has been written up in a few different diabetes magazines – without pausing to consider if it is right for me – really makes no sense. I am very guilty of wanting, needing the latest toy without necessarily stopping to think if it will serve any purpose.
There is already a lot in the calendar for 2017 – all the way through to its end with the IDF’s World Diabetes Congress rounding out the busy year in December. I’m the Deputy Stream Lead for the Living with Diabetes Stream, so there is no chance of slowing down as the year winds down.
So, with all this in mind, my word for the year is going to help shape how I approach things. I’ll have to see how it goes and I expect I’ll need to pull myself back at times, reminding myself to stop, think and, perhaps, wait. And then, as I pause, take the time to let things sink in, catch up and take shape.
On 11 January in 1922, a 14-year-old boy in Toronto was given the first insulin injection to treat diabetes. His name was Leonard Thompson, and he lived for another 13 years, before dying of pneumonia when he was 27 years old.
When he was given insulin for the first time, Leonard was on the only treatment available at the time for those diagnosed with type 1 diabetes. He was on a starvation diet, and he was close to death, drifting in and out of a coma because of diabetic ketoacidosis.
There are dates each year that trigger reminder lessons in the discovery of insulin. On those days, I say a silent thank you to Banting and Best for their work, grateful to them for my life and I peek into my refrigerator at the vials of insulin within easy reach for when they are needed.
But I also feel a great sense of sadness and frustration, because today, ninety-five years after Leonard Thompson was given his first insulin injection, this miracle drug is still inaccessible to so many people with diabetes. And people are dying, suffering in the way that Leonard was before he was given the drug for the first time.
Yes, I said ‘suffering’. And I don’t use that word. I don’t suffer from diabetes – I live with it. But make no mistake, someone who cannot access insulin and is dying from diabetic ketoacidosis is suffering. They are in pain; their body is in distress. They are dying.
The playing field is so un-level and that is simply not fair. So if you are able to – if you are one of the fortunate ones with insulin in your fridge, please do consider donating to those who are not.
Insulin for Life Global needs donations to fund transport costs for delivering insulin to those most in need. AUD$12.50 will cover the cost of sending two weeks’ worth of insulin.
Around Valentine’s Day each year, Spare a Rose, Save a Child suggests sending 11 instead of 12 roses. The AUD$6 saved provides insulin for a month to child with diabetes through the IDF’s Life for a Child program.
And for AUD$10, T1 International will send out their advocacy toolkit to five people with type 1 diabetes, providing information about how they can stand up for their rights.