My third ATTD, and as soon as I started reading through the program, flagging the sessions I planned to attend and the technology I was keen to get my hands on and learn more about, a familiar feeling started to settle over me. It was there the first time I attended the conference and again last year.
And that feeling is that this conference, more than any other, reminds me just how unlevel the diabetes landscape is. With the shiniest of the shiny and newest of new technology and the most impressive treatment options available to people with diabetes on show, the vast gap between the haves and have nots is stark.
I was not the only person to acknowledge this. My first full day in Berlin saw me in an advisory committee meeting with diabetes advocates from across Europe, and when asked about the most pressing issues in diabetes, access was at the top of the list for every single one of us. Most (if not all?) of us in that room live in places with outstanding funding and reimbursement programs for diabetes drugs, technology and education – having to go without or ration insulin isn’t something we have ever needed to consider. Even those of us self-funding CGM are in a position of extreme advantage to be able to cover the significant out of pocket expense. But we all know that for millions of people across the world, this is not the case.
And then, later in the week at the Ascensia Diabetes Social Media Summit, another issue that came up again and again was choice. Choice refers to range of factors in diabetes. Choice of the type of technology we use, including the different brands; choice of the healthcare setting we feel best suits our brand of diabetes; choice of the specific healthcare professionals we see. It is also the freedom to be comfortable with our choice of technology, not feeling we need to conform to what others believe is the right thing.
But just how real is the whole idea of choice in diabetes? And when it comes to technology, how much of the decision about what we are using and how we are managing our diabetes is truly our own?
When access to basic education and treatments is severely limited, there is rarely any choice at all. In some places, a diabetes diagnosis is life and death, and surely in those cases all that people are choosing is life. How they manage that is probably not contemplated at all. In countries where diabetes does actually equal a death sentence, no one is debating whether TIR and A1c is how they would like to track their diabetes management.
But we don’t need to look to countries where outcomes are still so desperate to see lack of choice. Just this week, a very distressed mother of a young child with diabetes called me because they had just been told they were not permitted to use the pump they had chosen after careful deliberation and research.
This isn’t uncommon. Diabetes clinics across Australia make it difficult for PWD to be able to use the technology we have decided is the best choice for us. Sometimes that means not being able to use the specific technology we want (i.e. refusing to sign the necessary paperwork for a pump), or it could mean not being given the right to choose the brand of device we prefer.
At ATTD, I frequently heard about how healthcare is being transformed, and that may be true for those of us not disadvantaged by the country where we live and are trying to access care. We should celebrate the advances being made and the better outcomes so many of us have seen. But at the same time, we need to find a way to not get so far ahead of ourselves that we leave the most vulnerable further and further behind.
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March 7, 2019 at 3:37 am
Dennis Goldensohn
Very well stated! There is no doubt there classes of haves and have nots across all populations. The fact that insulin is such a problem, it just compounds the entire treatment issues that all diabetes patients have to deal with on a daily basis.
As far as choice, here in the US, UHC just put out a press release that they will only approve a Medtronic Pump for children. I found this to be quite disturbing since we all know one size does not fit all!!!! CGMs are a great thing to have, but in certain countries if your A1C is not above a certain level, well it’s a NO for you!
TIR from what I read from your previoous blog sounds to be a great idea and a better way to determine if in fact you are more within certain parameters. But how does someone who cannot get or afford a CGM utilize this metric instaed of the statndard A1C measurement?
The good looking devices that are out on the marketplace are surely an imporvement in the management of diabetes, but if the MAJORITY of us, 100,00,000 globally, cannot afford insulin then how are we going to find money to take advantage of all of these new toys? There is much work to do here to bring equity to everyone and just a select few.
Stay tuned, this is not going away so quickly! You and I will be talking about this for years to come. After going on 51 years as being a T1D, I am hoping that we start to make this stuff more affordable and coverage more inline with what diabetics need on a daily basis. It is in their best interest and in the long run, cheaper than having us wind up in a hospital due to diabetic complications!
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March 7, 2019 at 1:35 pm
Rick Phillips
I have long ago stopped worring about access. Or have I?
Right now I have many friends who cannot get access to CGM’s pumps or modern insulin. So who are these people? The young yes, but also the elderly. As I start to think about losing my private (privileged) health insurance coverage in a few years, i realize what a think line I and my peers (in America my generation is having 15,000 per day turn 65) start to be elderly we are losing diabetes options. Those we have we have to fight for constantly.
So yeah, tech access is not equal and the most vulnerable parts of our community are – well vulnerable.
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