Thursday, 19 July 2018

Freestyle Libre Update - July 2018



Sometimes my blogs are general and are timeless classics. (Yes I am lolling lots at that and my tongue is firmly in my cheek.) The point I'm making is that if you fired up the DeLorean and came from the future most of the post will still be correct. This one is slightly different as the information is pretty specific to July 2018.


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Each summer Abbott Diabetes Care invite bloggers from across Europe to their Diabetes Exchange Europe events. The purpose of the event is for Abbott to learn from the diabetes community and also for the bloggers to learn from Abbott about their products and how these are being developed. Here are my thoughts from last year. This year’s event was held in Dublin and saw 34 bloggers attend from right across Europe and also one from Canada and two from Brazil. Imagine the Eurovision Song Contest with slightly less singing or voting.

*Full disclosure is that those attending were not paid but received standard class travel, nice food, nice accommodation and a full programme of events. Not all attendees are Libre users and a signed agreement confirms that we are not obliged to report anything or only say good things about the company or its products. We were also asked to delay sharing the details below until today due to key financials being reported by the parent company. I am more than happy to discuss integrity and bias if you desire; but please don’t do it secretly; I prefer to know what people think.

I've got a few blogs in my head from the weekend but it may take me a while to convert them into typed words. As this one is more factual than opinion and as the news is fresh I was keen to get it out quickly.

I won't be the only one sharing this information today so please ask any of us the questions that pop up and we'll answer the best we can.

On the final morning we visited West Pharma near Dublin. The facility creates parts of the device and inserter and then builds and packages the final devices before they are boxed onsite and sent to distribution centres. The West facility is one of two manufacturing plants in Ireland that have automated the assembly process since January 2016. The implanted sensor parts are still manufactured in Witney, Oxfordshire. The West plant works 24/7/365.

Following the tour there was a presentation and question and answer section from Jared Watkin (Senior VP, Diabetes Care) and Scott House (VP of Operations).

Currently their are over 42 countries with the Libre, 5 with the Libre Pro and one with the Libre H (see below).

There are 800,000 people using the Libre every month. Current growth is at around 50,000 new customers per month.

The Dublin site is a sister facility to the one in Cork which both produce the finished product. Late last year and earlier this year investment was secured from the board for further manufacturing expansion of a 9000m sq. manufacturing plant being built in North West Ireland. They aim to do in 2 years what took them 5 years the first time around. This new facility will manufacture the sensor part of the device to duplicate what is done in Witney. This preparation was started at the beginning of June this year.

There are three devices are currently in production:

  • Libre – the normal 14 or 10 day sensor used by patients independently.
  • Libre Pro – a device used by healthcare professionals (HCP) where the person with diabetes has the sensor attached for 14 days but is not able to scan the Libre. The HCP downloads all the data after 14 days to spot trends etc.
  • Libre H – this device is only used in hospitals in China. It allows Chinese HCPs to scan multiple patients in very large wards to reduce finger prick testing.  This products works well in China where data is written down rather than automatic downloads. We were told that automated systems and GDPR mean it is not expected this will be rolled out into Europe at the moment.

Keeping up with demand is a big headache for them and they are continually returning to the Abbott board to ask for more manufacturing investment. Unfortunately getting the green light, then finding locations and building the manufacturing devices takes time. All the machinery is custom made but having made them elsewhere already helps a little for future expansion.

By the end of 2019 production will have been increased by 50% from today’s levels and it will increase in further in each quarter of 2020.

The existing plants reached full capacity last month and this should mean the current restriction for new customers will be lifted but controlled in the next couple of months. Priority for new customers will be those who have registered an interest and have joined a waiting list. Order restrictions of 2 sensors per month (outside of US) will probably continue to be in place to try to limit stockpiling by users. Their focus is to ensure current customers can get hold of a required supply of sensors before adding new customers.

Feedback is actively welcomed. To quote Jared, "None of us can sit here and pretend the Libre is the perfect product and we don't need to do anything else." Feedback was key question for me. Abbott monitor both the official email / telephone help routes to spot patterns and recurring errors. This includes things such as where devices fall off within three days. Abbott are also now tracking through social media reports of problems to try and find patterns. Where a recurring problem is identified this will be researched. The take-away message here is to report all errors and problems when the sensor becomes ineffective.

The product is constantly being developed. The adhesive has been changed three times so far to try to reduce the instances of skin reaction and poor adhesion. The LibreLink and LibreView apps are also being improved and tweaked based on feedback. The use of apps instead of dedicated readers is beneficial as they can roll out software updates much more easily than to the standalone readers.

Now for the big ones:

  • Yes CGM is being worked on but you'll need to be patient. The desire is to keep the same shape and design with any product change. This will allow costs to be kept down and therefore help the price charged to the users. They are also very conscious of alarm fatigue and see this as a benefit of the Libre over CGM. They are also keen that any integration with other products that includes injections and pumps. eg Bigfoot Biomedical
  • They are moving towards joining the JDRF initiative on open protocol and see risks but also benefits in doing so.
  • R and D is constantly being done. Cost reduction is a key driver for everyone there. A key driver is to lower the cost to consumer. This is more likely to be through extended sensor life rather than a reduced sensor cost. i.e. if a sensor can be made to last 20 days this will cost the same to manufacture as one that lasts 14 days. The biggest problems to overcome seem to be skin reactions and longer adhesion times needed.
  • They expect competition to arrive. Can't avoid it forever. But Abbott believe that by investing in efficient manufacturing they can lead the field on sensor accuracy and cost. Production volumes are already far than the competition and they expect this to remain the case. This may sound arrogant but they are willing to be challenge.

If you've got this far, thanks. You'll have skimmed through the disclosure at the top and possibly taken everything I've written with a big pinch of salt. As I said, Abbott demanded nothing of me. I will say however, after looking into the eyes and listening to all Abbott paid employees I met, I have 100% confidence their desire is to make the Libre the best product they can and also doing it in the best way for the consumer / buyer. It's up to you to judge my impartiality.

I was one of many there this weekend so please seek out their blogs and thoughts as they will have detail I missed and also different views on bits too.



Tuesday, 3 July 2018

The Promise


So Chris aka Grumpy Pumper asked for contributors to his Complications series of blogs. I've read lots of other great posts on his site including his current experience of self-managing an IV drip - yes there are lots of blood filled pictures; you have been warned!

Now I like to help where I can so my immediate thought was to start writing. But then I paused. I know Grumps is keen to show that complications happen and they aren’t anything to be ashamed of. I agree. Fully.

The problem for me is that my complications today and historically are limited. I have the annual “you have background retinopathy, so be a better diabetic” letter along with the higher-prevalence condition of a feckless thyroid meaning daily thyroxine tablets. Not much to complain about there really. And I have fantastic support from my wife and family who keep me safe when I’m struggling to do it myself. 

My qualifications to talk on the subject seem distinctly lacking, so I should stop here, bow my head to those who have come through or are living with the side-effects of diabetes, thank them with gratitude for sharing their stories and retire with grace.  Or should I?

My experiences may be second-hand by seeing others with Type 1, either in my extended family or my online friends, but the constant background fear of the inevitable is always there for me.

For years the warnings of doom and impending gloom were what drove me away from going to my diabetes clinic and being honest about my numbers. If it’s going to happen what’s the point? My clinic appointments are now a lot different but the background beliefs still partly exist.

I view complications like I view a speeding ticket for my driving. The risk is always there and I do what I can to reduce the risks. However, at some point I’ll see the flash in the rear view mirror and the ticket / letter from a random complication clinic will arrive in the post.

What's often ignored is that we’re not talking about an exact science here. Complications arrive as a consequence of diabetes not purely as a consequence of badly controlled diabetes. While we may strive for perfect control as much as we can, we are reducing the likelihood of something happening, not removing the possibility entirely. Often I read about the certainty that;
  • Bad control = manky feet, blindness and other floppy body parts,
  • Good control = a nirvana of long-life and fluffy kittens.
My fear is that the more the story is told as fact, the harder the impact is for those that do get hit head-on by something that they weren’t expecting. Why harder? Well firstly there’s the complication to deal with. Secondly there’s the assumed knowledge that as ‘good’ control means no complications, if you have got one then your control has been, by default, pants.  You’ve failed. You had one additional job after staying alive by injecting and testing daily, and that was to stay complication-free. It wasn’t hard. You under-achieved.

Wrong. If you have got a complication, you didn’t lose or fail, life just dealt you another poor card. Lift your head, be proud to be still alive and carry on.

And if you don’t have anything else happening, you’re winning and you may never lose. Happy days.

Life throws bad stuff at people without diabetes and sometimes this is really big stuff that makes our daily challenges seem insignificant. We’d never look at those experiencing it, shake our head and judge them, So don’t do it to yourself or your peers. Offer a hand to hold or an ear to listen to and help them with their challenge that day.

One final thought links in with my last point. Just because someone with diabetes has something else going on, don’t guess that it’s related. A person walking down the road with a white stick and an insulin pen in their pocket could have just got hit by two completely separate, unrelated arrows. ‘it happens sometimes and let’s offer that person the same hand to hold and ear to listen with.

Don't be afraid to have discussions with those close to you or in the DOC (Diabetes Online Community) about things you're experiencing or feeling. Never be embarrassed to #talkaboutcomplications.

Keep dodging those arrows friends and enjoy the ride. Live for today, not for the fear and dread of tomorrow. Most of all; be nice to others and be nice to yourself.


*Random Summer of 2018 photo

#talkaboutcomplications


Wednesday, 7 February 2018

Spare A Rose - An Alternative Life


Spare A Rose - An Alternative Life



Although I'm not a fan of labels sometimes I'm called a Blogger. And sharing this description is Chris who is more often known as the Grumpy Pumper. A good chap who has no desire to hide the truths of living with Type 1 from his perspective. Head over to his blog and Twitter feed for some juicy feet pictures - click this link if manky feet are your thing.

Chris put the call out to other people who blog about a project he is very keen on because he wanted to spread the message far and wide. The formal request went like this:

“Who’s up for writing a post about how life would be different if at diagnosis Insulin was not free and you can’t afford it? #SpareARose

Spare A Rose started in 2013 and is something I’ve tweeted about in the past but, with regret, I've never blogged about. The campaign is run by the International Diabetes Federation’s Life For A Child organisation and using their words: 

It's simple: buy one less rose this Valentine's Day and donate the value of that flower to a child living with diabetes in a less-resourced country.

Last year over $22,000 was raised by Spare A Rose during 2017 through thousands of small donations. This enabled Life For A Child to support 369 young people with the insulin, tools and education they need to manage their diabetes.1 

So how do I address the question posed by Chris above? Well in my usual way, I’ll answer the question I choose to answer rather than the one given. (For anyone at high school taking exams, please don’t follow this method.)

Here goes.....

How would life would be different if insulin and medical treatment is not free at point of use and I have to make choices based on that?

I live in the UK where healthcare is paid for through general taxation. The concept is that medicines are free at the point of use. There are plenty of discussions to be had on the rights, wrongs and oddities about this. But as a principle I like it. A LOT. From a diabetes perspective no-one dies because they cannot afford insulin. No-one has to chose between paying for insulin or food.

So how would my life be different now if I had to pay for my insulin, needles, test strips, insulin pump and pump consumables? The initial thoughts are about how much it would cost and the impact of this on the rest of my life and the life of my family.

The bigger impact would probably be the emotional ones. I cannot imagine how tough it must be to have to make a choice between choosing to eat a healthy balanced diet or skipping meals because £5 gets added to the cost of every meal. And in many places this £5 equals more than a day's wage. And for background insulin (basal) there is no way to escape it, so you are paying daily for the chance to exist. 

Would it have affected my mind so much that it also affected my educational, career and personal choices? I don’t know but I expect it would have. The constant worry and need to find the money to live would have made me make different life choices.

If I have to pay for every blood test, doctor’s appointment and eye test, I have a choice to make; do I choose to have them if it’s costing me money to pay every time? Possibly not. So what’s the impact of that? Do I now have undiscovered complications ticking along that arrive like a 10 tonne lorry at a later date? Probably.

And when that lorry appears a small daily cost becomes a very big cost to fix and then my choices become much harder and I’m trading big debts for my family for decades for a few extra years on earth.

These are my hypothetical choices but these are the same decisions being made by people living with type 1 diabetes, around the world every single day. These people are just like you or your child with type 1 diabetes. Chance, fate or a random deity has put you in a different place able to buy a rose (or 24!) instead of using every penny or rand to stay alive.

(Space deliberately left blank for you to think about your situation and how it might be different without easy, affordable access to medicines and healthcare)

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So impress the person who makes your heart skip a beat when you think about them and give them 11 roses this year instead of 12 or 12 instead of 24. Prove your ❤️is more thoughtful than just a quick Interflora online purchase. Display to your true love what a good person you are. Donate at the link below to show you’re part of a special community that cares about someone who’s battling daily to get supplies of life-saving medicine and equipment to live one more day. 

We are that community. We care. You care!

Thank you for taking the time to read and thank you for your donation here - https://lifeforachildusa.org/#give. You can choose to donate the value of a single rose, a bunch of them or a whole darned bush. One rose ($5) equates to life for 1 child for 1 month.
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* If you read my last blog piece you’ll also have seen my comments on insulin4all. That is a similar campaign looking to improve access to insulin around the world and this includes countries that are definitely not “less resourced”. Yes I’m looking at you the pharmaceutical companies, selling to the US Healthcare behemoths at inflated prices which are then passed on to the users.



Saturday, 30 September 2017

DXAmsterdam - The Cost of Diabetes



In the interests of being bang up to date and cutting edge in my reviews and information here's a few words on my trip to Amsterdam with the Abbott Freestyle Libre team in June. Yes, only three months ago. I must slow down in my rushed reporting otherwise you'll be visiting this blog every month instead of twice a year!

Obligatory 'biased view' disclaimer out of the way first. I was one of nine bloggers from the UK and Ireland invited for the weekend in the city of canals and killer bikes. There we met over 20 bloggers from around Europe. Yes, they paid for my travel, food, a few of my drinks, though definitely not all and provided a pretty good, fun-filled weekend. On the flipside they did not demand any quick blogging, which is a good thing, or 'positive' reporting. All views and opinions are my own.

Now if I'd got to this quicker I'd be able to give a fresh and detailed review of the weekend. Instead what you get are the bits that have really stuck in my mind. In the interests of saving me repeating what has been written before I've given a few links at the bottom of this to other blogs. Please do click through as it's a great selection.

For me the weekend was a great chance to meet the other bloggers with different experiences and knowledge sharing a common dodgy pancreas. Some of this was entertaining and some were pretty upsetting and grounding.

Related to this I'm now going to focus on the thing that is still on my mind three months later.

On the Friday night we had a brief presentation from Matthijs Graner who runs http://www.eendiabetes.nl/. His presentation was around the idea of a simple thought leading to interesting projects. He told the story of how he had worked to build photographic calendars of young people with type 1 diabetes in the Netherlands. 

We were then asked by Matthijs to have a think about things we could do that could be useful in different countries. Chatting with Mike and a few others we started to think about the thing that had already come up a few times in conversation. Living with our diabetes thing 24/7 it's easy to become engrossed in our own experience and focus on the bad bits for us. It quickly became apparent that while the UK has challenges for funding and technological availability we also have all insulin provided free at the point of use. Along with this, people with type 1 diabetes have access to blood glucose testing strips. Sometimes their are local limitations on quantity but a good argument or change of can normally fix this.

For me I also have access to an insulin pump to deliver my insulin as I meet criteria for this. Along with this all cannulas, reservoirs and batteries for the pump are paid for. And when I need to replace this, although I will probably have to justify why I need one to improve my control, I do not expect it to be an issue getting it replaced. The make and model might be more limited but it’s a start.

In the UK the government collect money from general and salary taxation. That pays for the National Health Service. The basic concept of the NHS is that care is free at the point of need so that if you need medicine or treatment you do not have to pay up front before it is provided. Before people dive in here and say “Ah, but….” I’m trying to summarise the generality. Specifically for type 1 diabetes, insulin and test strips are paid for by everyone who pays taxes so that the person with type 1 diabetes does not pay when they order a refill of insulin, test strips or pump supplies if they have a pump. Local awkward GPs and CCGs may mean you are experiencing different but I’m speaking for the majority.

Outside of this I currently pay for the Freestyle Libre to provide me an up to the minute graph of where my blood sugars are. As an example, as I write this my number is 4.5. But I can see from the graph that this number is good as the line is relatively level and the direction of the indicating arrow is horizontal. This is a personal choice for me to make my life easier. If I chose not use it I’d be looking at a similar number on my Contour Next meter and wondering if I’m dropping and whether I need to read an impending hypo or the reality which is I’m fine for now. It's not cheap and definitely not an option for all but it's a choice I've been able to make to make my D-life easier.

We’ll come to the rest of the world in a moment. What about the rest of Europe? After we shared our idea around the room it quickly became apparent that each country provided a different model for paying for your diabetes. For some pretty much everything was paid for by the government and for others hardly anything was. In those countries where it was ‘paid for’ there may be additional health insurance to pay for because you have type 1.

Some models of provision were simply bizarre to me. An attendee from Turkey explained that her insulin pump was partly paid for by the government. She had to pay roughly half and then pay for all the consumables. And after 4 years when the warranty expires the pump has to be handed back and a new one purchased even if it’s working perfectly well. Totally mind-blowing.

Of particular concern to me was the testimony of Maria from Greece. The country’s financial strife was such a problem that test strips were now becoming something that had to be bought and she was part of a an active movement that was campaigning very hard so that people with type 1 diabetes had access to very basic levels of care and weren’t just neglected. Once again it struck home to me how fortunate I am to have the NHS.

These discussions showed to me that it’s easy to look at the green grass elsewhere and cherry pick what other countries do well and ignoring what they do badly. As I write this a life critical campaign called Insulin For All https://www.t1international.com/insulin4all/ is trying to ensure every person type 1 around the world has access to the basic liquid that is needed to keep them a live at an affordable price. For those reading from the UK it may surprise you that one of the countries where this problem is largest is the 13th richest country in the world with the common perception that it is one of the most developed. The USA. Yes there are people across the pond who are making choices every day over whether to pay for food or insulin. As a child of the NHS I find this truly shocking.

As I sat in Amsterdam hearing fantastically inspiring stories from people like Claire Lomas eating dinner with my new blogging friends at the back of my mind was a guilt and gratitude that still lingers to this day. I’m fortunate to have been born when and where I did which gives me access to high quality insulin deliverable in a safe manner in a way that I can afford. 100 years or 10,000 miles in another direction and my story would be completely different and possibly much shorter.

Last up comes a thank you to Abbott. I believe their intentions are to improve technology and the access to it. As a private company, yes they will need to ultimately make a profit, such is life. But all the people I have met from Abbott and the look in their eyes convinces me their personal aim is to improve the lives of people with all types of diabetes. They will get things wrong, such as the random expiry dates of sensors and massive supply issues when the Libre was first released but I hope they will learn from these and over time the cost of the sensors also drop to allow access to all irrespective of local funding. Disclaimer is nice and clear at the top so I'll allow you to judge my integrity but I know I'm OK.




As promised here are the links to other blogs and also another link to Insulin for All. For a good list of documents relating to insulin costs in have a look down Laura’s timeline on Twitter. https://twitter.com/Kidfears99

Every Day Ups and Downs
Thrive Diabetes
Adrian

Thanks as always for reading. See you in a few months!