Recently, I seen a shiny graphic on IFLscience’s twitter page (@IFLScience) depicting the significant amounts of money raised for certain disease/conditions compared to those which have highest mortality rates (U.S. data). Published in Vox, by health author Julia Belluz, it highlighted that the amount donated to breast cancer research was unbalanced to the amount of deaths caused by this form of cancer. The data further showed, most deaths calculated from the CDC (Centre for Disease Control and prevention) data were due to heart disease. This article was written in response to the latest ice bucket challenges for ALS, the graphic can be found here.
Almost immediately, I zoned in on the green dots representing diabetes. If you look at the image, you will see the comparative donations to deaths caused by diabetes. This image, on the whole is pictorial and not really relevant to what goes on in the UK – for that I fear the amount raised for Diabetes research would be even smaller in comparison to the deaths caused. However, let’s look at complications. One of which, CVD/ heart disease is a major killer in the UK. The British Heart Foundation say is the second biggest killer in the uk!
Costs associated with Education
With this in mind, I started to try and research more information on facts and figures relating to UK diabetes, it’s complications, management of type 1 diabetes and more personal to me – relating to children. I found a Diabetes Uk document which addresses issues surround type 1 and type 2 diabetes in Scotland (found here) and highlights the fact that children with Type 1 diabetes in Scotland need support, personalised care and infrastructure in place during educational environments to support their health needs. The incidence in younger children being diagnosed with Type 1 diabetes in Scotland is also on the rise, and with one of the highest prevalence rates in the world I would say this issue needs addressing, with urgency, by groups who are willing to tackle the underlying questions surrounding the cause of this autoimmune condition and it’s treatment and/or cure. In education, the cost of caring for a child sometimes is put in place with additional support funding – but not always. Staffing levels can be poorly managed and the care of the child at risk – as was our case (and why I had to homeschool my son for a short period of time before he started secondary school recently). Government and local authortities must be encouraged and advised by leading health authorities on the complexity and importance of supporting a child at school with Type 1 Diabetes. Children <5yrs starting school and learning to cope with this condition have an adult sized worry on their very little shoulders and setting aside the politics and costs of this, they need positive, nurturing and caring environments to help them feel they can take this on and cope with the daily challenges. Surely you would not be happy to inject yourself with a dose of insulin, with fear it could kill you when you don’t understand what you’re doing? Any yet, some environments are placing a great emphasis on children to be as independent as possible. This gap in knowledge in society, of the severity of insulin replacement, and it’s potential to cause severe hypoglycaemia should be at the root of all educational policy and the needs of children with this life threatening disability.
With paediatric care in mind, I can say from my own personal experience of caring for a child with Type 1 diabetes, and aiming for tight glycaemic control (to ward of the evil ‘diabeasties’) is like a game of pin the tail on the donkey at times. Constant measurement of food, dose adjustments, finger prick testing, site rotations, faulty insulin (which doesn’t change colour when denatured – this would be a great idea for Novo Nordisk wouldn’t it folks?) counteracting extreme exercise, battling with growth hormone, adjusting doses due to possible gluten contamination (if your child also has coeliac disease like mine does) calculation of the glycaemic index and fat content Vs insulin delivery (dual wave/combo) ratio’s – the list goes on. It’s a wonder I don’t receive an honorary degree in mathematics!
What about the cost of current treatment methods?
So the cost effectiveness for pump therapy for us is one of a more qualitative result. On multiple daily injections (MDI) our son used to inject >7 times a day with insulin. Relying on a manual finger prick to give a small snapshot of what his blood glucose levels were doing – at that time only! At times, he used to refuse to eat just to save another injection, at other times he used to sneak food upstairs and then cry when he felt consumed with guilt that he didn’t tell us and his glucose levels would be through the roof! His legs and arms were bruised, and swimming with a child covered in bruises was difficult at times. The social anxiety grew as he got older, injecting in front of friends or the constant ” my gran has diabetes, she doesn’t need to have injections” from friends used to send him into a furious rage not unlike the incredible Hulk. His HbA1c fluctuated between 7.9 and 8.4% and despite daily calculations and management, it seemed a dauntless task to get no reward. On starting insulin pump therapy, he now has an HbA1c of 7.1% and a better future ahead. We still do need to rely on daily finger prick tests (10-12x) to get a clear idea of how to progress with each bolus or correction, as our local health board do not fund for CGM (continuous glucose monitors) at this time.
A recent study of adults with Type 1 Diabetes in Australia, found the CGM + CSII insulin system to be cost effective in patients with severe hypoglycaemic unawareness, but why does it need to get the stage that someone is needing ambulatory care before they are considered for this technology? In Scotland, there are very few children with funded CGM technology and those who do use the linked technology to communicate with the pump of an impending hypoglycaemic attack tend to self fund – costing over £3,000 annually. JDRF discuss the CGM system and running costs here. These patients and families often have an HbA1c <7% which speaks for itself. In terms of prevention of complications further in life, this should be standard care for paediatric patients in my view. Balancing the costs of hospital admissions, treatment for complications related to Type 1 Diabetes surely would outweigh the model for increased access to CGM technology?
Like anything, the further you read and research, you find there are people in the world who genuinely want to see this cured from collaborations to research groups globally. Calls to collaborate with some of the worlds biggest pharmaceutical companies may bring about a fascination that returns will be high (if a project can deliver better therapies) but also, from a technological point of view, if great minds can come together to produce the likes of the minimed duo from Medtronic, then I feel very hopeful that sharing of data and research can highlight the incumbent path for a cure.
So for all those inundated with paperwork, deadlines, project milestones and KPI’s – remember there are people fundraising for you, people supporting you and hope that all these trials will lead to greatness and hopefully a Nobel Prize?