Tag Archive for: type 1 diabetes
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!
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.
My EASD2020 Summary
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! 😉
+ 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.
Questions…
– 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? 👈🏼
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.
Brittle Diabetes?
Have you ever heard of brittle diabetes?
What is it? What are the signs? How can you get out iof it?
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?
Disclaimer
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.
My Pump Break 2020
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…)
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.
Tuna Meatzza
I’m making one of my favorite low carb pizzas – tuna meatzza 🍕 (yes, that means the base is made out of canned tuna!)
Don’t knock it until you’ve tried it! 😋 It’s full of delicious protein, fat and some carbs. And – it’s delicious. It’s also the first time I ever cook in front of the camera. 🐒 This week’s #type1thursday is something else…
Let’s go!
Ps. If you want to watch the whole Cook & Chat (not just the recipe), click here to watch it on my Facebook page!
Tuna Meatzza Recipe
Tuna Meatzza base
2 cans of tuna in brine/natural
1 egg 2 tbsp cream cheese
ca 0.5 dl grana padano cheese
Mix all of it until it becomes a smooth mix. Flatten out between two parchment papers, pre-cook in the oven at 180 Celcius (355 Fahrenheit) for 10-15 minutes.
Meatzza Sauce
1,5 dl Ajvar (turkish vegetable sauce)
1 tbsp tomato puree
1 tsp concentrated bone broth
italian herbs
garlic powder
onion powder
a splash of water
Let simmer until it forms a nice pizza sauce
Tuna Meatzza Toppings
Mozzarella cheese (shredded, without starches!) You can use fresh, too, but it gets waterier.
1 red onion
black olives 😋
After pre-cooking the pizza base, spread on the sauce, followed by the toppings and put it back in the oven for about 10 mins.
Enjoy a low carb, nutritious and delicious meatzza! 🍕 🤤
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.
Digital Patient Engagement?
I was interviewed by Novo Nordisk regarding how I see the future of patient engagement, as part of their DEEP network.
Check out my views in this short video. What are your views on digital patient engagement – friend or foe? 🤔
(This is a sponsored activity by Novo Nordisk. Views are my own)
#WEGOHealthAwards
Pinch me…!
I’ve been nominated for not one, but THREE #WEGOHealthAwards!🎉 : “Best Kept Secret”, “Patient Leader Hero” and “Best In Show: Instagram” 💖
Aaaand, endorsements are now open for the 9th annual WEGO Health Awards!
I’d be over the moon if you would want to endorse me for either (or both!) of these awards.
You can do so by:
☝️ clicking this link: https://www.wegohealth.com/HannaBoethius
✌🏼 click “Awards” in the upper right hand corner
🤟🏼 Endorse!
Thank you from the bottom of my heart to those who nominated me, as well as to YOU for endorsing. 🙏✨
Diabetes & Discrimination?
I’m sure you (too) have a story about discrimination against you because you had diabetes?
On today’s #type1thursday, I want to hear your stories!
What brought this on was a very unfortunate ad by the police in Hamburg, Germany, where they appealed to people to call the police of they saw someone injecting themselves. With the headline “Insulin or Heroin?” Wow. Ouch! (see the image below!)
I share a few instances of my own experience with diabetes & discrimination, perhaps you can relate to some of them, too?
This is the image that my friend Steffi from Pep Me Up Diabetes Blog shared on her Instagram. (Steffi also has some awesome tools to Pep Up your diabetes, check it out here!)
👉🏼 What are your stories about diabetes and discrimination? And how can/should we react to it? Let’s chat! 👈🏼
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.