I have been a little saddened to see some of the frantic reactions in the instant world of social media to the news that the latest version of the Freestyle
Libre monitoring system - Libre 3 - is unlikely be automatically available on NHS
prescription to all living with Type One Diabetes in the UK.
It’s perhaps inevitable, given that we have been, quite frankly,
spoilt by the rapid advances in diabetes management over the past five years or
so, thanks in no small part to the team led by the indefatigable Partha
Kar, whose enthusiasm and openness on social media has driven so much positive
change.
Those expressing dismay that progress from Libre 2 to Libre 3 is not
automatic should perhaps take a moment to think back just six years to the start of 2016 in
the world of diabetes. It was a very different world: insulin pump therapy was still widely regarded as something
mainly for kids or for those who had "failed" with MDI; looping technology was a somewhat subversive subculture in the
hands of a of a few tech-savvy enthusiasts; very few people had even heard of
the FreeStyle Libre - the overwhelming majority of us were still drawing blood
from our battered and bruised fingers for an occasional snapshot of how our glucose
levels were responding to the insulin we had put in a few hours previously; and
the online diabetes peer-support community was a still very small group of social media
users, not the vast and diverse body that it is today.
Six years on, things are very different: Access to pumps and
to looping technology has grown significantly and is being trialled on the NHS
with the likely prospect of greatly increased availability in the
not-too-distant future, and the FreeStyle Libre (Flash version) is not far from
being standard issue to all with Type One and soon for some with Type Two.
Alongside this, and to a good extent the reason for all this progress, an
online-based community of patients, enthusiastic healthcare professionals and diabetes
charities continues to bring together and support those living with diabetes in
a way which would have seemed pure fantasy even at the time of my diagnosis at
the dawn of the internet age in 1997.
Compared to many living with Type One, I am relatively new to the condition. For
those - and there are many - who have lived with Type One for half a century or
more, the difference in how their condition is treated and managed is extraordinary - take a look at
this article by my friend Peter Davies, for example. Recent years, even
recent months and weeks have been interesting and exciting, and despite the
continuing challenges of living with the condition, not least during these past
two years of a global pandemic, we have much to be grateful for, and many
reasons to be optimistic about the future.
Of course the biggest change was a century ago. Tomorrow, January 11th 2022, marks the
centenary of the first use of insulin therapy by the team led by Sir Frederick Banting in Canada - a cause for celebration which has already been much talked
and written about, and which is rightly commemorated in the special edition 50p
coin which many of us have bought or received as a gift in recent weeks.
As I never tire of saying, in most parts of the prosperous
Western world of 2022, we are lucky compared to our forebears of only a few
generations ago and indeed the millions living in countries where access to the
insulin and monitoring technology on which we rely is not the same as that
which we take for granted.
I therefore cannot help but feel that the somewhat grasping reaction to the news of the imminent arrival of Libre 3 to the UK represents something of a loss of perspective and a lack of gratitude for where we already are. For a start, as Partha rightly and politely reminded the online community on Friday, we are still in the period of consultation regarding access to Libre 3. The expectation is that it will NOT be an automatic entitlement to all living with Type One, and it is this revelation which has caused all the furore. However, this should not come as a surprise to those who have really read and thought about the guidelines revealed and warmly welcomed as recently as November, which stated that people with Type One would be entitled to Flash OR CGM according to individual need. Libre 1 and 2 are flash, but Libre 3 is a CGM, and that distinction is important, perhaps inevitably clouded by the use of the same brand name with the number 3 after it.
My reaction is to agree with this distinction. At present, I neither
want nor need a real-time CGM: non-invasive monitoring which tells us the
direction of travel of glucose levels was the quantum leap, and Libre 2 was
another big leap from Libre 1 which for me ended the worry of night-time hypos.
That’ll do me for now, and I’d rather leave NHS funding to those who need CGM
more than me, such as children, those with no hypo awareness or the very old. And indeed for access to Flash for those living with Type Two, who could benefit every bit as much as we Type Ones have done.
I am lucky that I have good hypo awareness, and in general
terms I usually have a pretty good idea of what my BG is, so constant BG information from a CGM is for me an unwanted intrusion, indeed a reminder of a condition in which I am
not actually very interested and which I prefer to keep in the background of my
life: CGM is TMI for me and there is definitely such a thing as too much information about blood sugar levels.
So for now, I agree with the distinction between Flash and CGM, and for many, including me, the former is at present more than sufficient. Others may feel differently, and it might inevitably lead to talk of differing interpretations of "complex management needs", and so take us down the road of "postcode lottery" as to who gets it and who doesn't, or that those who are more vocal, pushy, well-informed or privileged may be more likely to qualify.
I speak, of course, as someone who uses MDI (we are still very much the majority) and who is - for now - perfectly happy with it, but if the numbers using a pump and closed loops starts to grow significantly as a result of recent changes and trials, the demand for a CGM may start to increase. But that’s one for the future.
Technology is a wonderful thing, and I am lifelong
technophile. But it has its limits, and there are already many examples in
everyday life where I am not alone in finding that the constant need for an
upgrade sometimes blinds us to the virtues of tried and trusted simpler
technology. Cars, satnavs, smart TVs, smartphones, washing machines, tumble
driers have all arguably become so smart that many of us choose to ignore many
of the features that we have paid for. The “upgrade” culture which is forced upon
us has its downsides, and I for one often prefer to wait and see before jumping
on board with the latest technology craze.
I want it all...I want it now sang Queen in one of their less memorable songs, an anthem to greed that I never particularly warmed to, and the reaction to the availability
of Libre 3 has reminded me of that song and makes it a good title to this post.
Perhaps now is a moment when access to diabetes technology
should be driven by need not greed. We have come a long way in a short time,
and sometimes patients need to be patient.
Appendix: for reference, here are links to the current consultation documents via NICE:
TYPE 1 Diabetes in Adults:
https://www.nice.org.uk/guidance/indevelopment/gid-ng10265
TYPE 2 Diabetes in Adults:
https://www.nice.org.uk/guidance/indevelopment/gid-ng10264
TYPE 1 and 2 Diabetes in Children & Young People:
