Monday, 23 July 2018

Looking After Number One?



Readers of my blog will know that all my posts are given song titles. So for this one, I browsed through my Irish songs playlist looking for a suitable title. Amidst some gems ranging from Thin Lizzy to Dana, I was reminded of the exhilarating emergence of the Boomtown Rats in the summer of 1977, adding sophistication to the raw energy of punk which had ruffled so many feathers over the previous year. Long before he became a fĂȘted anti-poverty campaigner, Bob Geldof encapsulated the zeitgeist of that summer with an anthem to self-interest - Looking after Number One. Click on the link and discover it or remind yourself. Great song, but not my values, nor those of Mr Geldof in later years. Let me explain in these reflections on DX Dublin, the fourth meet-up of European diabetes influencers organised and sponsored by Abbott healthcare.

Much of the content of these conferences is only obliquely related to diabetes, but it was during a session on the second day led by two senior figures from Abbott Diabetes Care that I was reminded how much has changed in the four years since I started talking about diabetes online, let alone in the 20+ years that I have lived with the condition.

We were presented with some statistics about the take-up of FreeStyle Libre flash glucose monitoring system around the world which make clear how rapid the spread of this piece of technology has been. A glance at diabetes social media over the past year shows how access to technology remains a dominant issue for those who live with the condition, and the statistics on the spread and growth of access to flash monitoring throughout the world makes clear what a real appetite and need there is for something more sophisticated than just pricking your finger as and when possible and convenient.

FreeStyle Libre has its critics, and like any technology, it’s not perfect and not for everybody. But I well remember at the first real-world meet-up of people with diabetes (#PWDC15 at Nottingham) when Lis Warren, already by then a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. This was shortly after the Libre had been launched, and at the time, a very small group of people in the UK and a few other European countries were using it. 

"Proper” CGM was - and still is - an expensive luxury beyond the means of most ordinary people and certainly beyond the means of any publically funded healthcare system. Libre, however, has quickly proved itself to be a pragmatic compromise: a discreet and reliable way for many to keep tabs on their blood sugar levels without being pestered by alarms, at a cost which is affordable to some self-funders, and more importantly affordable enough to be seriously considered for public funding. Four years on, the dream of non-invasive and continuous monitoring “for the many, not the few” is still far from reality, but a good deal closer.

But the most interesting point made by Jared Watkin, Senior Vice-President of Diabetes Care at Abbott, was that the FreeStyle Libre was the first significant new diabetes tech product launch to have taken place in the full and unforgiving glare of the social media era. As such, the progress of the device, the praise, the reviews, the criticisms, have all taken place largely in the unregulated, unpredictable and uncontrollable world of Facebook, Twitter and Instagram. Previous new devices and therapies were perhaps advertised in specialist publications, marketed to healthcare professionals by sales reps, but with patients largely dependent on others for knowledge and access to advances in their care.

Not for the first time, this makes me feel lucky to be (just) young enough to be part of this phenomenon. Jared and his colleagues reminded us of the massive cultural change that companies such as Abbott have had to adjust to, with their product and the customer support for it subject to constant review and comment in a manner impossible to imagine even a decade ago.

I am very fortunate to be one of those members of the patient community who are asked by companies like Abbott to play a (very small) part in this process. There are voices in the online community who criticise those of us who are “affiliated” to the healthcare industry, and it is easy to make cheap accusations that we are the undeserving recipients of benefits and sweeteners from an industry only too keen to cultivate a group who will sing their praises online.

In truth, those who take part in events such as the DX series organised by Abbott are in my experience interested in only one thing, and that is to attempt to represent the diabetes patient voice in their own countries. And to allow such people the chance to meet together and compare and contrast experiences is of huge value not so much to them as individuals, but to the communities of which they are a part. 

My favourite moment at DXDublin was during a session on patient advocacy when I found myself in a small group discussion with Dimitris from Greece, Weronika from Poland, Bianca from Brazil and Melanie from Wales. How else could we five have ever found ourselves around the same table discussing living with diabetes in our very differing circumstances? The value to the communities in which we live is difficult to prove, impossible to quantify, but very real in my opinion.


An Englishman, a Greek, a Pole, a Brazilian and a Welshwoman
Yes, we had lots of fun and laughter over the weekend, yes I loved spending time with some who are already good friends and others whom I was meeting for the first time, but the engagement and commitment shown by all to diabetes advocacy in their home countries is truly awe-inspiring. 


Expert patients from across Europe

The weekend’s programme included valuable sessions from experts in communications and advocacy - for me the most memorable being the hugely impressive Tiernan Brady, one of the most prominent LGBTI rights and equality campaigners in the world. His humble and good humoured but powerful session on how he helped secure the epoch-making votes in favour of gay marriage in Ireland and Australia was truly inspirational for me and many others in the room, and taught us much about the art of persuading and representing in our hyper-connected world.

#DXDublin was a wonderful experience, an opportunity for which I am truly grateful, and I wish to thank all those who worked so hard to put together and deliver the programme, and also those who took part. It is very hard to resist the oft-stated conclusion, surrounded as I was by people with Type One from all over Europe and beyond, all of them significantly younger than me, that people with diabetes are almost invariably outward-looking, generous-minded and sensitive individuals.


Diabuddies from across Europe and beyond

So why the title? Let's say that far from Looking after Number One, DX helps us to make a better job of Looking after Type One, not just for ourselves, but also for others.

Disclaimer: I was invited to DX Dublin by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

5 comments:

  1. Hi Adrian,

    Wonderful photos from Dublin :)

    Self-care is so important - we have to look after ourselves so that we can look after others :)

    Dreadful lyrics from that song though - I'm quite surprised by Bob Geldof at that time ...

    Here are some interesting CGM links :)

    This one's on Abbott's collaboration with the insulin pump company Bigfoot to develop a real time closed loop hybrid system.

    I would hope it's therefore only a matter of time before Abbott release a free standing real time version of the Libre.

    https://www.cnbc.com/2018/03/28/abbott-invests-in-diabetes-care-start-up-bigfoot-biomedical.html

    Waveform are nearing the release of their real time CGM in Europe:

    https://www.pharmafield.co.uk/pharma_news/waveform-continuous-glucose-monitoring/

    The Dexcom G6 is still about twice the price of the Libre in the UK but the cost will hopefully come down with their Alphabet / Google collaboration:

    https://www.wareable.com/health-and-wellbeing/dexcom-g6-cgm-diabetes-verily-259

    The cost remains a fraction of that of many of the drugs that we use in other autoimmune diseases such as rheumatoid arthritis. The health economic analyses will be critical, taking into account reduced complications.

    This is a great Guardian article on Dana Lewis and the DIY closed loop hybrid - they're developing some great innovations around pre-meal dosing.

    https://www.theguardian.com/lifeandstyle/2018/jul/20/diabetes-experience-i-built-my-own-pancreas

    Thank you again for the wonderful blog and your advice - I've put my plans on hold for writing a regular one for the moment.

    Very best wishes,

    Ian

    ReplyDelete
  2. Thanks very much for you interest and your constructive comments, much appreciated as always. My blog post is well complemented by this from Dave Sowerby, who also attended the event:

    http://thetangerinediabetic.blogspot.com/2018/07/freestyle-libre-update-july-2018_19.html

    Kind regards and best wishes,

    Adrian

    ReplyDelete
  3. Hi Adran,

    Thank you ever so much - Dave's blog is great too :)

    Wonderful that CGM uptake is taking off so much in Europe now - much kudos to Abbott for all their hard work in driving this.

    I'm not sure I agree about the issues with alarm fatigue with real time CGMs - you can customise the alarm limits, and the general advice is to start with a wider BG range at first and narrow it down as you get better at self management.

    The imminent low alarm has woken me up safely overnight several times (before going hypo) when I really wouldn't have been able to predict it - and there's considerable data now on arrhythmias with hypos ...

    Average BG 6.5, SD 1.5, so not overly tight control.

    Very best wishes,

    Ian

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  4. Loved your review of dX. And I know I’ve only been to a couple for blogger cons so far... and I know I’m biased but I thought this was the best conference I’ve been to yet! I’m only getting around to doing my posts now but fully recharged after my holiday.

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