Wednesday, September 13, 2017

Liberation?

Freestyle Libre. It captured the imagination of the public and professional as soon as it arrived. I suppose you could see why. I use the word "suppose" as for someone who isn't living with diabetes, it is slightly odd to say otherwise in my view. It opened up the prospect of "checking your glucose levels without having to prick your finger". Pretty revolutionary as a concept, no question. You put a disc like thing on you, it lasts for 2 weeks and then...you just scan yourself-whenever you want and voila, you can see your glucose levels. I mean, what the heck, right? This was Star Trek level stuff and when it landed, the expressions of incredulity were understandably high.

However, post that, started, quite rightly, the questions. It looks fancy, sure, but does it do the job? Does it check glucose levels well? Does it stand the test of time? As someone who works in the field of diabetes, I always try to learn from evidence in the public domain, talk to colleagues using it as well as and perhaps more importantly the feedback of patients. It started with a degree of mixture of views from the "oh my Lord, where was this thing all my life" to the "Meh, doesn't really match with my needs in life". As time progressed, other issues emerged, such as evidence base or lack of it, problems with adhesive used, data fatigue for patients...to name a few.

As time progressed, reports started coming in about its improvement, it's use as well as local knowledge about patients needing it, benefitting from it, and my own understanding grew. What also grew was the clamour of why the NHS was standing by and encouraging a 2 tier system. Available to buy on the market, it became available to some, but not to many. Frustrations grew as those who really needed it couldn't afford it and some departments ended up begging their local CCGs for case by case scenario as well as use of charity funds etc. A non sustainable situation emerged as its efficacy-as per clinicians- grew, and the clamour for it being available grew with it.

It's been a fascinating experience working on this from within NHS England and liaising with Department of Health, NICE, diabetes charities such as JDRF, Diabetes UK and INPUT- as well as numerous individual patients and clinicians. Many issues emerged- such as the importance of training both clinicians and patients. What good is a device - however slick it is- if you don't know what to do with it? I have found views from academics fascinating- driven by numbers and asking for more trials - where do you go with that when a sizeable number of patients ask for it,should be having it and daily input from clinics suggest this could be a way ahead for the thousands who don't check their blood sugars at all? Or those who are fed up of testing? Or the kids who can be checked for night time lows without having to wake them up? Is it my role or those who don't have diabetes to make a judgement and make them wait? Or is it our role to listen yet ensure we have enough checks to facilitate the process of improved care? It's a tough one as as I also pick up the frustration on both sides- one clamouring for more data, one for quicker adoption. The whole sphere of medicine is forever engaged in this tough battle- with accusations of the NHS being archaic, old. An NHS which is afraid to use WhatsApp due to security yet send letters by post, uses fax machines....fascinating.

So what about this bit of kit? You want to have a bit of rough context? A bit of finances to whet your appetite? Each DKA admission costs approx £2000. You could approximately treat 20-25 patients with type 1 diabetes in a month and need to prevent 1 of them getting admitted - once-..in that month- give or take. One. That's all that's needed to "recoup" the cost.
Throw in the lesser strips needed, the benefit of added education, the impact behind sheer numbers such as A1c, relevance in hypos, engagement ...well...we may just have a case for it. This is a simply more innovative way of measuring your glucose levels- nothing else. In a world where Expo17 was mostly about adoption of technology and innovation, it's up to you as a payor how you see this in relation to existing blood sugar monitoring systems.

So we are here and the obvious questions are : what's next? Is it for anyone with diabetes? No. But given the right education with the right support, it indeed is for some. The device is not a toy- it is to be seen as a tool to help folks self manage- just as blood sugar monitoring is for those on intensive insulin- and without hesitation, that principle of "do you have the right education" applies to BOTH the patient and the healthcare professional. It is thus satisfying to see this "land" and have a place in type 1 diabetes management in the UK- it's about time we modernised ourselves a bit. It is now available on tariff- which I also appreciate does involve local negotiations. 
And ladies and gentlemen, this is exactly where specialists need to stand up and be the advocate for their patients. Use your relations, make your business case, learn from each other, if needed- do ask for help- but please, do make the case. If you can make the case for a GLP-1 analogue or a new swish insulin, you can make it for this too. That is YOUR role. My role was to work with all concerned and ensure it got to tariff- the next step is all yours. And if you don't believe this is for your patients? Then explain why to the patients when they come along- why they are being sucked into a post code lottery because of your personal beliefs.

Finally, the question has been why only Libre for Abbott. The answer to the question is simple- because it is the first of its type - at a financial competitive margin. Does this open up the door for others? Possibly but it needs engagement, it needs working with policy makers, not doing silly things like denigrating your competition. I would like to see ALL relevant technology available to patients- but there needs to be balance, there needs to be evidence that professionals know how to use them, there needs to be financial considerations, there needs to be dialogue. Working with industry is a 2 way street. This could be the start of something exciting- the environment seems ripe for digital innovation- this is only but a part of it.

I would like to finish this by thanking Diabetes UK, JDRF and INPUT for their consistent support and help while putting up my flashes of temper & impertinence ( no puns), the team of Lord O'Shaughnessy in the Department of Health, NICE team who helped with the Innovation briefing and the finance team within NHS England as well as clinicians like Pratik Chaudhury, Emma Wilmot, Marc Atkins,Iain Cranston, Gerry Rayman, Mark Evans,David Russell-Jones, Stephanie Amiel, et al who have been fabulously supportive as well as has had kind words of advice when needed. It's been a tortuous journey but we are here. 
But most of all? Thank you to the numerous patients, either those on social media or those I meet who continue to be a source of strength- supportive, encouraging, helping- especially during those late nights when the knocks taken hurt just a little bit more.

The journey however isn't complete. This is perhaps only the end of the first quarter. The second will need to show adoption of this technology uniformly while the following ones will look at other relevant technology such as CGMS devices, sensor augmented pumps, further non invasive glucose monitoring, OpenAPS technology et al.


Can we do it? I have faith in you all we can. This has been a perfect example of what can be done if all relevant bodies join forces for need of patients. 
Together, ladies & gentlemen, we are much stronger.


1 comment:

  1. Thank Partha for the work on this. Libre has been great for me (other than the price and occasionally coming out), but helped with both sugars and sugar-anxiety. Time to ask if it's available locally...

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