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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.
‘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.
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.
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.
Last week, my Timehop app reminded me of this snapshot in time.
This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.
The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)
The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!
Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.
So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.
If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.
Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.
I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.
I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.
The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.
However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.
It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.
I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?
I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.
We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.
As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.
And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.
Yesterday, I went to the fridge and pulled out a fresh vial of insulin. I used it to refill my insulin pump and then placed the mostly-full vial in my bag. As it was the second to last vial from my current prescription, I called my local pharmacy and asked if they could order me in a repeat of my prescription.
And then I wandered to a favourite café for breakfast and didn’t think about it again. I knew that the following day I’d receive a call from the pharmacist telling me that my insulin was waiting for me and I’d go in on my way home from work, fork over $40 and be set for another three or so months.
That’s not how it works in a lot of other places around the world. And it’s why when I was contacted by Joanna Sader from Insulin for Life Global asking me to be an Ambassador for the organisation, I didn’t hesitate before answering ‘Of course!’
Insulin for Life has been around for a long time. I remember when I was very new to the diabetes organisation world hearing all about it from the organisation’s founder Ron Raab. And then, a couple of years ago, I saw a wonderful documentary, Sweet 16, about the program, made by a young woman from Canada.
The organisation has continued to expand over the years, and today, on World Diabetes Day, is launching Insulin for Life Global (IFL Global). The organisation contributes to international efforts providing insulin to people unable to afford or access insulin or diabetes supplies in developing countries.
IFL Global, through its country affiliates, collects in-date and unneeded insulin and diabetes supplies, distributing them to developing countries, where they are distributed free of charge. It also fundraises to support transport costs, which is the biggest barrier to keeping the operation going.
You can learn more about the program by going to their new website and by watching the video below.
How can you help? Glad you asked! There are many ways you can get involved including making a one-off or regular donations, promoting their work through your networks or donating unused, in-date insulin and diabetes supplies. Details about how you can contribute to IFL Global can be found here.
I write a lot about remembering to look outside our bubble of privilege. Insulin for Life Global is another player in the space reminding us that diabetes drugs and supplies are not a right for all. And we can – and should – do something to help. Our diabetes brothers and sisters around the world do not deserve to die because they cannot access the life-saving drugs so many of us take for granted.
A couple of weeks ago, I spent a very uncomfortable hour talking to someone who was telling me that the very idea of sending any sort of health aid to another country was horrendous because the situation here in Australia is so dire. They went on to say that the refused to support programs helping people in other countries access insulin and diabetes supplies because that was the responsibility of the government of that country.
I’ve thought about the conversation a lot. And then today, on my TimeHop app, this post from last year came up. I wish I had remembered these words then because I sat there mute after trying to explain why it’s important that we help others who are not as fortunate as we are here in Australia and being cut off and told I didn’t know what I was talking about. I decided that there was simply no point in trying to argue.
So today, I thought I’d share the post. Remembering to look outside our own bubble is always important, And today -especially today – it seems even more critical.
I speak a lot about the challenges of living with diabetes. Sometimes, the challenges don’t directly relate to me, but I can still see and understand that the diabetes experience is different to anyone and one person’s easy-peasy-lemon-squeezy is another person’s anxiety- and stress-inducing concern.
One of the things that perplexes and annoys me is people who are unable to see diabetes outside of their own bubble. Frequently these people fail to see that just because they don’t need information about <insert topic here> that doesn’t mean everyone has access to or an understanding of it.
Sometimes, when I was involved in running an activity or speaking about a topic at an event, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that for lots of people living with diabetes this is an issue that is of concern.
I ‘work in diabetes’ (which sounds ridiculous, but you know what I mean) and the last person’s diabetes that gets considered when I am at work and thinking of developing programs is my own. If I thought, for one minute, that my experience of living with diabetes mirrors most others, then I’d be utterly naïve and not doing my job. That’s why working and engaging with, and listening to as wide a range of people affected by diabetes as possible is critical to delivering services that are of use.
(Because, let’s be honest, if it really were all about me, I’d spend lots of time and effort working with the leather crafters at Hermes to help me design a perfect diabetes bag. Because: shallow. And lots of stuff.)
And you know if you just rolled your eyes at that last comment because you have found (or designed) the perfect bag and think it is waste of time to speak about it because it doesn’t affect you, then a) stop it, and b) can you tell me where to get one? Thanks.
With World Diabetes Day next week, it’s a great time to think about how others deal with diabetes, what they know, what they don’t, what their concerns may be.
If I only cared about what was going on in my diabetes bubble, I wouldn’t write so much about campaigns like #Insulin4All. You can read all about the campaign here, and my post about it during the lead up to 2014’s WDD.
I have never had trouble accessing insulin. But that doesn’t mean that I don’t care about those who do.
Because the team at T1International have a new initiative: they are urging people to sign their Type 1 Diabetes Access Charter which outlines five rights that all people with diabetes should have:
- The right to insulin
- The right to manage your blood sugar
- The right to diabetes education
- The right to healthcare
- The right to live free from discrimination
None of these things are luxuries. These are basic human rights that should be afforded to every single person diagnosed with diabetes – not just those of us lucky to be born in a country such as Australia. Insulin is not a new-fangled, fancy drug. It has been around for 95 years. When talking about the right to the tools required to manage bloody sugar, we are not talking latest technology such as continuous or flash glucose monitoring or hybrid-closed loop systems that are entering the market. We are talking about basic blood glucose meters and strips.
The reality is that around the world, many people cannot access or afford insulin or diabetes supplies. Education is sporadic at best. People with diabetes are being forced to choose between buying insulin and buying food or other essentials. How do you make the decision between putting food on the table or buying the life-saving drug you – or your loved one – needs to stay alive? It’s a decision that most of us in Australia never have to even contemplate, but it is a reality for many, many people around the world.
I messaged T1 International founder, Elizabeth Rowley, yesterday to let her know I would be writing about the charter today, but I also wanted to comment on a Facebook post she had just shared.
Elizabeth had used the JDRF diabetes stats calculator (as discussed in yesterday’s post) and shared her results. She had a very different take to how many others responded.
She reminded us that she is the one of the lucky ones because in her almost 25 years as a PWD, she has been able to access whatever she has needed to manage her condition.
When I did my diabetes numbers, I looked at the terrifying number of BGL checks I have done over the last 18 years: 34,749 (although Aaron did suggest that during pregnancy alone I would have done that many!). Not once have I ever had to wonder from where I would be getting my next box of strips. Not once have I thought about rationing strips or pump consumables for fear that I could not afford more when I ran out. Not once have I had to consider taking less insulin that I need.
The scary thing about the numbers generated by the JDRF calculator is not the huge numbers many of us are seeing tallied up. In fact, it is actually the small numbers in those people with diabetes who can’t access what they need to manage their diabetes.
T1 International is doing some amazing things – just as they have done since they started a yea few years ago. Please check out their website, click below to sign the charter and get your friends and family to sign too, and if you can, make a donation to this really important cause.