Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on. 

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition which, if well managed, is not degenerative requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability as much as a disease, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability, or who are paying lip service but imposing prohibitive criteria, cite its cost yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a diabetes consultant who spoke at the Rise of the Machines event in February. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access to therapies for people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??