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Questions for (Diabetes) Companies
Photo by Clark Tibbs on Unsplash
For the past few years, I’ve had the incredible honor of being asked to mentor and collaborate with different Diabetes companies on their person centricity – both large and smaller ones.
Providing Diabetes companies with the person with diabetes (PWD) insights, experience and expertise is (or should be?) very valuable to the companies, and should be an integral part of said company’s strategy and communications.
20 Questions for (Diabetes) Companies
Today, I thought I’d share a few of the questions I consider with these companies with you:
- How does the company collect and incorporate PWD feedback into their product development process?
- What strategies does the company use to ensure your services/products are designed/co-created with the PWD’s needs as a primary focus?
- How does the company educate and empower PWD to make informed decisions about their health using the platform/solution?
- Does the company have a PWD advisory board or any formalized PWD involvement in their decision-making process?
- What measures does the company take to ensure the privacy and security of PWD data?
- How does the company measure PWD satisfaction, and what key metrics do they track?
- How does the company ensure that their technology or service is accessible and user-friendly for PWD of all demographics, including those with disabilities?
- Can they describe any specific initiatives or programs aimed at increasing PWD engagement with their service or product?
- Can they share any success stories where PWD involvement significantly improved an outcome or aspect of their service?
- What are the future plans or upcoming initiatives to enhance PWD involvement in the company?
- How does the solution personalize care to meet the individual needs of each PWD?
- How quickly can PWD expect to see changes or improvements based on their feedback?
- What communication channels does the company use to interact with PWD, and how do they ensure efficacy?
- How does the compnay ensure that their services/products are culturally sensitive and appropriate for diverse populations?
- Can they provide examples of how PWD involvement has led to improved health outcomes?
- What strategies does the company have in place to retain patients and ensure the PWD’s continued engagement with the product/service?
- How does the company handle PWD complaints or negative feedback, and what processes are in place to address them?
- Do they involve PWD in the user testing phase of the product development? If so, how?
- How does the company support people with diabetes regarding ongoing healthcare needs?
- Does the compnay collaborate with PWD organizations or advocacy groups to improve their offerings? If yes, how do these collaborations impact the product/service?
Which questions did I miss? Let me know in the comments!
What Strange Things Impact Your Blood Sugar?
What are the STRANGE things that make your blood sugar go either up or down, high or low? 🤔
In this week’s Type 1 Thursday 💙 we discuss our personal experiences, based on Adam Brown’s graphic “42 Factors that Affect Blood Glucose”🩸
While some of these factors may be strange ones to impact blood sugars, I, of course, thought we should take it a step further. With diabetes being such an individual condition to live with, I wanted to know what the strange things are that impact YOUR blood sugar?
I asked this on my Instagram Stories, and got some amazing replies!
We’ll stick to the same categories as Adam uses in his graphic; food 🍽️, medication 💊, activity 🤸🏼, environmental 🌿, biological 🧬, and behavioral 😄, adding our own strangest things that impact blood sugars!
Strange Food Impacts
Let’s start with food because it is such a fantastic thing! I love food so much – I love eating food, enjoying food, everything. Because diabetes is such an individual thing to live with, I wanted to know what are the “strange” foods for you that has an unexpected impact on your blood sugar? Perhaps it probably shouldn’t have an impact, but definitely does?
Starting with your replies to my Stories, the first one is (of course!) porridge, or oatmeal. It really shoots people high in terms of blood sugar, and then someone said that they come down really low afterwards. Someone else said that “it’s not that healthy because it shoots you up to so high”. This is definitely a thing and I don’t think it’s unusual. Bread was another example, as well as pasta (starting to sense a theme here!) These are also blood sugar killers for myself, and dosing the correct amount of insulin for them is really hard (plus I’m quite gluten sensitive. The gluten free versions are almost worse because they have an even higher carb count because it’s made out of corn and and rice flour instead of the wheat.). Even the more complex carbs are not that easy. While many people seem to be able to eat it without problems, so it’s not always impossible! It just means that it’s a bit more challenging and you have to find the way that works out for you.
For me personally, a strange (although not so uncommon) thing to impact blood sugars is caffeine. I really do notice when I’ve had caffeine and not. Probably the strangest one I have in my repertoire is raw cabbage. If I eat raw cabbage, it will spike me, but if it’s either cooked or treated somehow, it won’t. This is a really interesting thing to me. I have no idea why. but I’m guessing it’s because of the vitamin C in the raw version impacting the sensor reading more than tactual blood sugar. But I’m not sure if that’s true at all. The opposite seems to work for boiled carrots being a bit of a challenge. But raw for some reason works for me. I just had two smaller raw carrots without any changes in blood sugar. difference.
Also, for me recently, maltitol, the sweetener that is supposed to have zero blood sugar impact, really does spike me quite horribly. Even if things say “sugar free”, “low carb” and even “keto”, it’s not a free grab-and-go, no, no, no! I still have to look at the label and not take it for granted.
However, when I was young, we had a science experiment in school where we grew some sprouts (alfalfa?). I remember eating those and my blood sugar would actually drop. I wonder if anyone else has noticed that? I’m guessing it’s somehow related to, intestinal flora or gut flora or something like that? (If anyone else knows what’s going on there, please do share!)
Medications…
The only one I can I can really say is that some antihistamines cause a raise in blood sugars. And, of course, certain interactions, like for example, steroids make you more insulin resistant, which is not really that strange, but can be unexpected.
If you have any medications that unexpectedly raises or lowers their blood sugar do share!
Strange Activity Impacts
This one is a bit funny. Every time I vacuum my blood sugar plummets (and I know I’m not alone in this but I don’t see mentioned much)! I don’t understand what it is about it? Maybe it’s just my really vigorous, pissed off version of vacuuming that makes my blood sugar low? I always have to ask my husband to do it and I trade for something else, just so I won’t go low.
Environmental Factors
Someone commented about how cold weather makes their blood sugar go low. For me, it’s almost the opposite. Cold weather makes my blood sugar go high, whereas a warmer weather lowers it. I’m guessing for this person that sent in that comment, it’s the other way around? That’s really interesting, because sometimes you just really feel like the weather impacts your blood sugar. And you know what it really does! This is strange to me, because technically it shouldn’t. Anyway, this can, of course, be during sleep, too. If it gets too warm in the room while you sleep, or too cold your blood sugar also react according to your personal weather blood sugar reaction profile.
Strange Biological Factors
The biggest one here, of course, is stress and anxiety. I always say, and I feel like a broken record here, that it is blood sugar killer number one. It can really make or break your blood sugar levels. That’s why stress management and stress relief is so important in diabetes care for me. Stress and anxiety raise my blood sugar, no matter whether it’s a hard meeting with with a boss or for a project, or even something fun like holding a workshop or public speaking engagements, stuff like that. Or you know, it can be just family, which can be a source of stress and anxiety! Another comment is that “anxiety comes in when my blood sugar is low”. Hypo anxiety is absolutely 100% real. Dreams can really impact your blood sugar, if you have a scary dream, you can get really stressed and scared.
Something personally stress-inducing for me right now is dealing with my health insurance. They’re being the acronym of PITA, which is highly applicable to them right now! Dealing with health insurance, or diabetes admin in any way or form is a form of stress and anxiety.
“For me everything raises my blood sugar” Yeah, that’s actually very true. But also quite biological. As we only have one thing to lower our blood sugar, which is insulin, and there are four or five other hormones in our bodies that raise it. Meaning that insulin is fighting a hard fight on its own! This gets especially challenging if you then don’t, in addition, produce the insulin and have to be a pancreatic understudy. So it’s really not easy.
Someone sent in this fantastic comment in my Stories, that petting animals, because it reduces stress, really increases their insulin sensitivity. I love this because I love the reason so much!
Hormones…
It’s really interesting, and I’m only bringing it up, not because it’s that strange, because, you know, it’s biological (and logical?), BUT because there’s so many people who don’t maybe have it in the back of their minds. Periods, PMS/T – times of the month – but also time of life (puberty, pregnancy, menopause…) can also really impact blood sugars. See it as a small reminder to track your cycle quite closely. That way, you can be more proactive rather than reactive in caring for your blood sugars.
Another biological reason for strange blood sugar impact is jetlag. Your blood sugar can go up or down depending on timezones and traveling across them. And it really doesn’t seem logical at times! Unrelated (but perhaps not after all?), have you ever noticed that your vitamin D levels can impact your blood sugars, as well? If your vitamin D is too low, you can be more insulin resistant, for example. When it is in a normal range, or in a good range, then you are more sensitive (I know this has been a topic on Instagram a while ago!).
Strange Behaviour
There are a lot of things that you can do behaviorally, that may or may not help you in caring for your blood sugars! My biggest example here is being out of your normal routine and how that impacts your blood sugars. It can make it more difficult and more challenging to keep blood sugars that you are used to as normal. That can also be of course due to jetlag, or something like that, of course. But also, if you need to do something different, I’ve had two very early mornings here in the past couple of weeks, where I had to get somewhere else for a meeting, and that definitely changes my blood sugar management for that day, only because I’m out of my routine and comfort zone.
I’m loving all these fantastically weird and wonderful things that impact blood sugar levels for you guys, and for myself, as well. I hope you’ve learned something!
What did we miss?! Leave a comment and let’s chat more. 💬
Disclaimer
The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.
blood sugar, impact, strange, insulin, diabetes, anxiety, stress, blood sugar levels, biological, jetlag, high, routine
Recent Insulin Pricing Changes
What are your thoughts on the recent insulin pricing changes in the USA? Let’s discuss and see what else needs to be done to safeguard the new insulin pricing. BUT – this is not about me sharing my opinion on this (that’s just effing ridiculous because I have no clue!) I want to hear from you – let’s discuss in the comments!
Throughout March 2023, both Eli Lilly and Novo Nordisk (and since I wrote this, also Sanofi!) have announced insulin pricing reductions of 70-78%. (just in case you’ve been living under neath the rock in the diabetes community lately!) These three players make up 90% of the insulin production in the world. They are really the ones that can make a difference for so many people, including people like you and me, and everyone that do rely on life supporting medications such as insulin.
These recent insulin pricing changes are a fantastic first step! It’s so needed in the community. (However, let’s look forward and see where we go from here (more on that further down))
At the same time, I am wondering why these insulin pricing changes are only happening now? There’s been pressure on these big companies from many different sides in the US and internationally, not least through a T1International with Elizabeth Pfiester at forefront of the barricades, so to speak, fighting for this to happen. This is definitely influenced and done by diabetes advocates, such as you and me, sharing our opinion and signing petitions and sharing content that ultimately put pressure on these companies. We have something to be proud of, even the ones of us who are not in the US! We are still cheering you on from the sidelines, so happy for this development. In my opinion, these decisions were really pressurised by advocates, along with the development of biosimilar insulin producers (smaller companies that are in the process, or already are, producing insulins that work very similarly to the ones protected by the big insulin producers).
Furthermore, why stop at insulin? Insulin is, of course, the one thing that we do need to live. Technically, we don’t necessarily need insulin pumps, CGM’s and stuff. But what about pricing of these enormously helpful tools and technology? I realise that there is a lot of profit to be made from living with this lifelong condition – I get it. But why not try to alleviate the burden of living with diabetes further and change the pricing structure on these, as well? Insulin, YES, a fantastic first step! But let’s keep going.
In the light of that since 2002, these insulin prices have tripled. In 21 years, the price has tripled. To me, the notion and opinion that insulin pricing legislation is needed in the US, only makes sense as a next step. I do believe that is something that we will see – hopefully pretty soon! Realistically, I think it might still take some time.
Another question that I’ve seen floating around is whether or not the discount cards for the different insulins will be removed or if they’re going to be kept? This is, and I guess remains closely linked to the status of health insurance in the US, which is a very complex, highly complex matter (especially in the eyes of a very, in comparison, privileged European resident.)
The recent insulin pricing change will definitely save lives. Every person with diabetes who is insulin dependent in the US, will see the effect of this and it will make sure that they do have a fairer access to their life saving medication. I do hope for the sake of these big companies that the new insulin pricing is not just a PR stunt, that it is actually real, and they will help to save lives.
On the other hand. one can’t deny that the high insulin pricing has cost a lot of lives, effort and energy. These pricing changes won’t bring back the people who have passed away due to rationing their medication. Who had to not get the insulin because of the costs, and instead had to prioritise other costs. No matter the actions made now, there are so many forever heartbroken parents, siblings and children who will never get that significant person in their life back. However, at least this can maybe prevent many more from going the same way.
While the insulin pricing point is lowered by 70-78%, respectively, we have to remember that the production price of a vial of insulin is $3-6. In the future, paying $50-60 for a vial of insulin is still (ridiculously) much profit for these companies. I’m certain we won’t see any bankrupts happening with these pricing changes! (At the same time, I have been wrong before, so let’s see what happens.)
I’m trying to share my picture here. But I am also very far away from the US. I live in Europe in a very privileged country when it comes to insulin pricing. While I both sympathise and am empathic with the insulin pricing there, I will never understand exactly how it is. I live in Europe, and in Switzerland more specifically. I am almost ashamed to say how cheap my insulin is! For a five week supply, the full list price is the equivalent of $40, of which I pay 10%. So I personally pay $4 for five weeks of insulin, very much thanks to the private health insurance system that we do have here. (It’s mandatory for everyone to have a private health insurance in Switzerland. Of course, you pay a lot but on the other hand, you do get a lot back in return.) Same in for example, our Scandinavian counterparts, where I originally am from, or the NHS in England, where they have an universal healthcare system, where all medications are for free. Canada and Mexico aren’t affected by similar insulin pricing to the US. I wanted to highlight that there are still huge differences, even with these pricing changes in terms of what and how we can access it.
So in conclusion (and I think we’re all ready for this now!), I am following this with a huge interest. I’m hoping, and my positive little mindset is telling me that this could be a potential start of a huge domino effect. To other diabetes tools and tech and into other condition areas that are affected by high priced medications, as well as into other countries and ensuring accessibility. I’m hoping this is the first step to that!
Also, I can feel in my pinky toe that there will be a US legislation about this quite soon. Senator Sanders & Co just launched another initiative. Let’s see what happens (as similar things have been shut down before). Nevertheless, we are we’re waiting and watching with excitement.
Everyone in Europe and beyond are cheering you on in the US, we are so so happy for this great success. Well done to all advocates and everyone who have helped make this happen.
But yeah, what are your opinions? What are your pluses and minuses? Good, bad, ugly, something in between? frustrations, happiness, tears of joy?
Disclaimer
The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.
#ATTD2023 – Berlin, Germany
Advanced Treatments and Technologies for Diabetes (ATTD) is one of the world’s biggest diabetes conferences. It takes place yearly in a European city, and ATTD2023 this year it was held in Berlin, Germany (where I used to live, so I was very happy to go back!). In short, it is a fantastic roller coaster circus of people, brands, impressions, science, symposia, presentations, sessions – everything. It’s it’s a diabetes nerds little dream to go to there! Which is why I was very happy to be awarded a dedoc voices scholarship (THANK YOU very much to the dedoc team!), enabling me to join the conference. Dedoc covered my travel costs and accommodation, as well as my entry ticket to the event (so that is all clear, out in the open!). However, all the views and opinions that I’ve shared so far and about share with you now are my own, and are in no way influenced by dedoc – just to be super honest with you!
For this post, I have actually finally gathered my top five, no, actually six, takeaways from this year’s #attd2023, which took place at the end of February. I clearly needed some time to digest it all before I could put this together for you. Better late than never, right?!
1. Personalization of care 🤩
There was a huge focus on how to individualize care for the person, it was recognized both in terms of technology (considering it’s mainly a diabetes tech conference). The focus was on tech; automated insulin delivery systems, loops, CGMs, insulin pumps of different sizes, colors and shapes, kind of thing. And – the individualization of it came up in a lot of the sessions, talks, even on the on the industry floor, it was a lot of focus on how to individualize care, because we are not the same. It is so important! We are not an one-size-fits-all, whether it’s about nutrition or diabetes technology, or care in general – we’re not the same. It’s fantastic to see that the individualization part is finally being recognized after so many years of trying to get that on to the agenda.
The recognition of differences between us is great, and it goes hand in hand with the second top takeaway;
2. Interoperability of tech 🥳
The interoperability of technology! Starting the week with the OPEN Closing conference (if you haven’t checked out the OPEN Project, do it because they are doing some fantastic work on especially DIY looping systems and how they affect people and their care!), marking the end of the four year long project and all the studies that have come out of it. Inspiring, touching and hopeful for the future!
Another aspect was shown by a company called Diabeter from the Netherlands, which I predict holds the key to the future of diabetes care. They have a fantastic concept, where the daily data from every person with diabetes within a clinic is collected and analyzed by an algorithm. Your healthcare provider can then easily contact you when YOU need it, rather than when “it’s time”. I’m interested to hear if you feel the same – let me know in a comment below.
Continuous ketone monitoring was another topic. Just like we continuously measure glucose right now, we can also measure ketones and other multibiomarkers. It basically means that the same sensor would measure several points. So it’ll be glucose, ketones and lactate in this one example presented, giving you a bigger insight into your own health and your own care. So hey, it might actually be helpful! Abbott issued a press release for their planned ketone and glucose sensor last year, although they can’t say when it will be on the market yet.
Connected pens for those who don’t want, or can’t have, an insulin pump, was also heavily discussed. Connected pens would essentially do a similar job to an automated insulin delivery thing, but of course, there you actually have to take the insulin yourself. Still, the connection to the continuous glucose monitoring system/sensor could be immensely helpful for very many!
Sort-of in the same area, there was talk about glucose targets (and how technology can improve them, hence under point 2). Current blood sugar targets were questioned; should targets remain between 3.9 and 10 mmol/l (70-180 mg/dl) or if this should actually be tightened to further optimize health.Time in tight range, meaning up to 7.8 mmol/l (140 mg/dl), was suggested in one of my favorite sessions, because it was so thought provoking! With the help CGM, there are further metrics to check in on in on your care. On the one side, there is HbA1c, which we all measure every one once in a while, at least we should! The new-kid-on-the-bloc at ATTD was really time in range – LOTS of talk about it (I think close to every session I attended) I also did hear mentioned standard deviation of blood sugar as an aspect to review as well, which is fantastic considering if you look back on my blog, there is a lengthy video about this from several years ago, so I’m happy to see this. I almost cried a little in my chair saying that.
The summary of this point is really that diabetes tech is taking over care, and there’s nothing we can do about it, whether we want to or not! I’m all for tech, I am a bionic woman with all the tech.
3. Nutrition wasn’t really a topic 🤷🏻♀️
Nutrition, a topic that steadily gains traction in many other areas of health, health care and medicine, wasn’t really a topic at all at this year’s four day conference. In other areas, we see a lot of talk about nutrient density, and how important it is to make sure that you get as many nutrients as possible. There was basically the one session that I found on nutrition, which I, of course, attended, bearing in mind my nutritional background.
The session spent all of it’s allotted 90 minutes on talking about how to,in the future, change the automated insulin delivery algorithms so that they can handle things like pizza, or sushi. Soon, you don’t even have to let the system know that you are eating – it will recognize it itself. The full focus was on this aspect. The only comment I heard about actual nutrition was when a dietitian from the Sheba Medical Centre in Israel said: “yes, of course, you can eat pizza as a type one diabetic, but I would prefer you to eat broccoli.” And that was basically it when it came to nutrition!
This was something that definitely caught my eye and my brain. And yet, the consensus from another session was that “elevated glucose is harmful”. The discrepancy was big here – okay, we’re leaving the blood sugars solely in the hands of technology, whereas you can do so much with lifestyle choices when it comes to improving diabetes care.
4. Increased focus on sex-specific diabetes issues 🙌🏼
With International Women’s Day having been just around the corner, point number 4 is very interesting and well timed!
There was a clearly increased focus on sex specific diabetes issues. Let’s just cut to the chase – diabetes is different for women. Our hormone profile is one of the key operators in making this the case. Every stage of the time of the month is different, and that can impact blood sugar’s a lot, meaning changes are required in diabetes care, too. Further, different times in our lives, such as puberty, menstruation, pregnancy and menopause, have different outcomes and impacts on diabetes care, as well.
Two fellow dedoc voices presented on this during ATTD – Laura presented her masters thesis, a systematic review and meta analysis on T1D and menstruation, and Dawn presented her research into looping during menopause. So interesting, and so proud to see it coming from the community!
It was good to see this particular topic highlighted, as there has been very little focus on it before. Yes, we ABSOLUTELY need more research, we need more holistic research into women and diabetes. But this is a great start.
5. The patient voice is getting louder 📣
I’m happy to say that the patient voice is getting louder!
While I had a lot of mixed interactions during ATTD 2023, with some being clear that the patient presence and voice wasn’t that appreciated (🥴), I did notice that there were a lot of more focus on the patient voice in the scientific sessions and the symposia. For example, one of the chairs of ATTD, Professor Battelino, said during the dedoc symposium “we are listening”. This was a huge testament to that we are being heard more than we have before. Also, Professor Garg, the 2023 recipient of the ATTD-Lilly Insulin Centennial Award, actually thanked his patients for teaching him about diabetes. I thought that was really beautiful. And I can’t wait to see more healthcare professionals adopt a similar point of view when it comes to their patients. Because we do have a lot of expertise! We live with this 24/7 365 every second of every day, and why not listen to us and hear what we’re going through and maybe learn from it too?
6. Innovation is found within the community (rather than the big players)🚨
Innovation within the diabetes space really lies within the community rather than the big players.
The big diabetes companies were magnificent to see on the exhibition floor; bright (blinding?) displays, fantastic coffee, presentations and select influencers. And also their technology and solutions on offer. All good! But there wasn’t much innovation there – they seemed to live on the same technology and offering the same, or very similar things as they have done the past five years. All of them are focusing on loops, and different automated insulin delivery systems. Even the newest sensors weren’t out to test, just view through a glass box.
Actually, the innovation lies within the diabetes community. There were a whole startup/tech corner on the exhibition floor, with several smaller players, yet much more impressive and agile in what they are offering. Everything from little syringes for either children or when you pump fails, cheaper insulin pumps, thermometer solutions to ensure that your insulin is being stored correctly. Several app solutions for carb counting, gamifications, exercise, diabetic foot, and help to analyse all this diabetes related data we have. There are so many great ideas!
Many of these are working on the interoperability of technology, which wasn\t a topic at all for the big companies. They want to keep theirs, well, theirs. So fingers crossed that more and more people can can take part of their of what these innovators have to offer.
Dedoc & the #dedocvoices
For a long time, people with diabetes were not really welcome at these big diabetes conferences, they were not really encouraged to join (heck, we’re probably still aren’t really encouraged to join, yet there we are 😇). The conferences are still mainly focused at health care professionals of different kinds.
HOWEVER, through the dedoc voices program, you can apply for scholarships to go to these big diabetes events. This is amazing because this is where the patient voice and our voices are so sorely needed. While in some sessions and interactions they’re perhaps not as appreciated as in others, it is still very worth it to be there and hear the new stuff from the horse’s mouth, so to speak. Truly, dedocs hashtag #nothingaboutuswithoutus is so SPOT ON!
Next time they have a call for applications for the dedoc voices program you’ll find it by following @dedoc_org. They are a fantastic team behind it! Apply for the next one because you are going to leave being so inspired, so happy, feeling amazing having rejoinined the community after these few hard years that we’ve had. So I highly recommend!
What is covered in the scholarship:
– travel costs/flights
– hotel accommodation
– entrance to the conference
What’s the catch? None, beyond that you have to promise to #payitforward with the things you learn, see and experience at the conference to your community, whether online or in real life. The ultimate bonus is that you get to network with all these big companies, big names within diabetes, tell them how it is living with diabetes, and you get to enjoy the fantastic community that we are all part of.
Question – would you want to join such a big diabetes conference? What is your favorite takeaway? Leave me a comment below!
Ps. I know. It’s been A WHILE. The last few years have been heavy, both collectively and personally. In the interest of preserving my mental health, I had to reprioritize. But now I feel like it’s time to get back. And I’m very happy that it now is the time.
Disclaimer
The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.