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?

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!

I have saved all my Instagram Stories in a Stories Highlight on my profile, so you can see it all there!

And also, I wanted to highlight a fantastic summary post that I saw by my friend Michelle, where she has shared her top 10 takeaways from the same event.

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.

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.

My EASD2020 Summary

EASD2020 - Type 1 Thursday

Last week, I was fortunate enough to be able participate in EASD2020, through a scholarship from #dedocvoices The point of dedoc and dedocvoices is to give patients the chance to hear the new information and science from the source, as well as ask questions, under the motto of “Nothing about us, without us”, and I couldn’t agree more! What an amazing group to be part of, check them out and apply to join future conferences!

I’ve summarized my main take aways (although you may have seen some on social media throughout the event, too! (see below), trends, and, perhaps most intriguingly, my main questions and/or concerns…

Below is a short summary, in case a 16 minute video is too long! 😉

EASD2020 Summary – Hanna Boëthius

+ Surprisingly much talk about ketones, ketones as fuel & ketosis.
+ Epigenetics role in diabetes complications
+ Genetic subtypes of diabetes becoming more prevalent to be considered in the future.
+ Talk of health literacy, communication, individualised, personalisation, beyond medicine, integrated diabetes care, lifestyle, EDUCATION!
+ Loved getting to know new people, companies, tools, solutions.

– Patient perspective and expertise not acknowledged much.
– Conventional loops still can’t do anything for me at this point.
– Time-in-Range was all the rage. I find that goals are too high? Average user A1c is 8.1% of a specific pump…?
– PWD’s can’t even reach those: “TIR 60% is great 3.9-10 mmol/l (70-180 mg/dl)” “Mild hyperglycaemia, between 10-13.9 mmol/l (180-252 mg/dl)” Is it education, not the treatment, that is lacking?
– I’m a BIG believer in healthy, happy, normal blood sugars for all PWD! Where do these oranges come from? If a healthy person had a blood sugar closer to 10/180, they would be diabetic, and not healthy!

Here are my daily take away posts, for more details:

👉🏼What do you think? And what are your goal ranges for Time in Range? 👈🏼

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.

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Brittle Diabetes?

Type 1 Thursday - Brittle Diabetes

Have you ever heard of brittle diabetes?

What is it? What are the signs? How can you get out iof it?

Brittle Diabetes – Type 1 Thursday – Hanna Boëthius

Although the term “brittle diabetes” is wildly discussed and can come across as very negative and blaming, it’s a concept many people with diabetes (unfortunately) are familiar with. Perhaps you’ve been labeled “brittle” in your medical file, just lika I have in the past?

What can you do about it, then? Is it just to accept it and trry to live as peacefully as possible with it?

Au contraire!

Brittle diabetes can very well be dealt with, and removed from your life, too. It all depends on what the cause if for you. A few common causes of brittle diabetes are medication troubles, stress (blood glucose killer number 1!) , eating disorder, gastrointestinal issues, gastroparesis or insulin sensitivity, to mention a few.

Once you know this, try to look at what lifestyle changes would apply to you – nutrition, medication, movement, mindset, stress management… are a few points to keep in mind.

Share your experiences with me! What’s your number one trick for brittle diabetes?

The only purpose of this website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This 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.

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My Pump Break 2020

Pump Break 2020 - Type 1 Thursday

Have you ever taken a pump break?

I recently had a six week break from my insulin pump, and I’m not going to lie, going back to MDI (multiple daily injections) wasn’t as easy as I thought!

In this episode of #type1thursday, I share my reasons why, pros and cons of MDI, getting back in the pump, as well as my note-to-self for next time (hint: all of it exciting, none of it smooth…)

My #pumpbreak 2020 – Hanna Boëthius

Share your experiences with me, about pump breaks, MDI vs pump or what you’re most comfortable with?

DISCLAIMER 1: I wasn’t sponsored by any one or any company for this, and paid for all of it myself (with the help of my health insurance, obvi)
DISCLAIMER 2: This is just my own, personal experience. I can’t speak for anyone else, or their experiences.
DISCLAIMER 3: 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 are 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.