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Anxious parents and children at risk of sudden death

Parents of children with type one diabetes don’t sleep well

When children are born, parents don’t foresee spending their nights waking up every two hours, to prick their child’s finger and test their blood sugar levels.

Or face the terrifying reality, every time they drift back to sleep, that their precious child might die quietly that night, without even a whimper.

Parents of children with type 1 diabetes live in a complicated world of dedication, anxiety and broken sleep.

Few of them realise that the modern technology solutions able to keep their precious children safe, are accurate and affordable.

Or that many of the founders of these products are struggling to gain access to the very people who most need their services.

Many type 1 diabetes deaths could be prevented, but parents don’t know about new technology

‘Dead in bed’ syndrome refers to sudden and unexpected hypoglycaemia in people with type 1 diabetes. This syndrome is estimated to account for up to 50 type 1 diabetes deaths in Australia every.

An Australian app called Predictbgl has been on the market since 2013, that can give a future prediction of blood sugar levels for the next 8 – 10 hours, for costs starting at $9.95 a month.

It’s founder was told he could not even take the app with him to a diabetic camp, that his daughter was attending. Doctors have refused to believe the technology he created even existed.

Simon Carter now has an international base of customers, successfully managing their blood sugar using his accurate software. But how many Australian parents even know this software exists?

“I told the Doctors that my algorithm could predict future blood sugars, and they didn’t believe me” Simon Carter founder of Predictbgl

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Modern apps and devices are not being funded by Medicare or Private Insurers

There are now a wide range of technology services created specifically to help keep diabetics safe. Smart blood glucose machines that sync to smartphone apps.

Apps with funny animals helping to educate people about the importance of taking their medications. Implantable sensors that sync to wearable insulin pumps.

Smart scales to monitor for foot ulcers. Artificial Intelligence ophthalmology software to scan for diabetic retinopathy.

Few of these products are covered by government or private health plans. And information about them rarely reaches the mums and dads who sit up at night taking their children’s blood sugars. The solution to type 1 diabetes problems have been created. But they are not yet reaching their intended market.

Health reform has always struggled against a conservative culture

In order to move forward with health tech reform, it’s worth while taking a look back, at where we used to be, just a couple of hundred years ago.

The streets of European cities stank from the empty chamber pots and animal waste dumped into the streets every morning.

Doctors did not wash their hands between dissecting dead corpses in the mortuary for anatomy lessons and delivering babies.

Plagues swept across cities on a regular basis and were considered acts of divine retribution.

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A dedicated group of reformers, later called ‘The Sanitation movement’ spent their lives lobbying for changes to be made. They faced outrage, ridicule and bullying.

Undeterred, they brought in legislation to enforce clean water and uncontaminated food, the removal of rubbish and the abolition of slum housing.

Doctors were forced to wash their hands before operations and sterilize equipment. Councils were made to close off infected water wells. Hospitals were cleaned up, trained nurses replaced illiterate drunks and patients were given fresh bandages and good food.

Before 1880 the average life expectancy was around thirty five. By the turn of the century it had risen to fifty. It is now nearly eighty.

We need cut red tape, openly share data and teach patients and families how to manage their own chronic diseases

Like the Sanitation movement, health startups threaten the status quo. Health tech is a new way of thinking:  

  • Lowering costs while increasing efficiency
  • Helping people managing their own disease, instead of leaving them to deteriorate, then rushing them to the nearest Emergency Department
  • Only doing what is proven to be effective in the long term
  • Linking lifestyle factors like obesity to diseases like cancer
  • Sharing data across the world in on-line databases, rather than keeping private paper medical records

A book every parent of a diabetic child should read

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The Footy Lady by Stephanie Asher I was recently introduced to a great book about an Australian businesswoman and philanthropist Susan Alberti. It’s called The Footy Lady.

Susan’s daughter was diagnosed as type one diabetic at age of twelve. The girl, Danielle was not compliant with her medications. She experienced episodes of dangerously high and low blood glucose levels over a number of years. By her late twenties Danielle was losing her eyesight.

At 31 years of age she went into acute renal failure. The book is available in both hard copy and Kindle.

I’d strongly recommend anyone interested in health technology to read it.

Then think about how we can get apps like Predictbgl past the bureaucrates and into the hands of families of children with type one diabetes.

© Wikihospitals June 2018

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