Cure for Type One Diabetes? “If there’s a cure for this, I don’t want it” sang Diana Ross back in 1976.
Well of course, if someone offered any of us living with Type One Diabetes a cure that was permanent and free from nastier long-term side effects, we’d grab it with both hands. There’s a running joke among people with Type One that a cure is “ten years away” - I remember hearing this when I was diagnosed back in 1997 - and for a while I kidded myself that it might be true. I remember my late mother saying she would gladly use her pension pot to help fund any treatment that would cure me, and whilst I politely thanked her, I soon realised that her life savings were not in any danger.
“Ten years away” isn’t true, never was and possibly never will be. I’m fully reconciled to seeing out my time on this earth in the company of my unwanted friend T1D. I hope I’ve got thirty odd years left, and it would be great to make it to 50 years, especially having been diagnosed as an adult. That’s my life goal, but it will require me to see my 90th birthday and a little more for that to happen.
But if that sounds negative and defeatist, it isn’t. It’s just realistic, and I have to say that I had a “light bulb moment” after attending the wonderful Type One - Rise of the Machines event in London last Saturday, 24th February 2018.
Quick shout out to Partha Kar for making it happen, all the speakers, and Ben Moody and the team at TechUK for hosting. My light bulb moment is nothing particularly new, but rather just a clarity of focus about the way forward for managing Type One. Let me explain:
Rise of the Machines was all about the use of technology in managing - not defeating - Type One Diabetes. It was an inspirational day: we heard from some of the medical technology companies about their work in developing the gadgets and gizmos such as insulin pumps, CGMs and Flash Glucose monitors which have done much to improve the lives of those lucky enough to have access to them, and they deserve our applause and recognition for the work that they have done and continue to do to make our lives better. I am lucky to live in the era in which I do, and in the country in which I do. Then we heard from the big two charities, Diabetes UK and JDRF, who do so much to raise the funds required to fund technical and medical developments.
But we also heard from some of the stars of the world of #WeAreNotWaiting - those highly motivated people with diabetes, or parents of children with diabetes, who have used their skills in ICT, especially coding, to take what the medical technology companies have done and move it onwards in a way and at a speed that could not be achieved in the - rightly - cautious and regulated world of corporate medical technology.
Whilst the work of the #WeAreNotWaiting people on closed loops, artificial pancreases and the like is not for me and unlikely to be (it depends as a starting point on the use of insulin pump therapy, for which I am unlikely to be eligible in the foreseeable future), it shows what can be done and points the way to a longer-term future in which Type One Diabetes will be artificially managed to the extent that it can be a mere inconvenience rather than the full-time occupation that it all too often seems to be.
And therein lies the crux of the matter, and there are encouraging signs everywhere that people with diabetes, healthcare professionals and the scientific research community are starting to recognise it.
Diabetes is a condition, not a disease. Type One will not be “cured” in the foreseeable future. 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, especially one like Type One Diabetes which 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, 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 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 consultant who spoke at the Rise of the Machines event. 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 of 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. 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.