Software under skin helps save toddler

  • 11/09/2017
Emilia Lo Iacono is one of the youngest Kiwis living with type one diabetes.
Emilia Lo Iacono is one of the youngest Kiwis living with type one diabetes. Photo credit: Supplied

Little Emilia Lo Iacono didn’t miss a beat when her dad left her for her first day at a Wellington creche last week.

"She said ‘Bye bye, see ya!’" her father Vito smiled. "She’s very social. She needs it."

But he had more reason than most parents to feel anxious. In his daughter’s lunch box was a careful selection of low carbohydrate snacks; in her backpack was an emergency stash of life-saving insulin. 

At just seventeen months old, Emilia is one of the youngest New Zealanders living with type one diabetes.

The toddler was diagnosed six months ago, when her ‘mischievous, daredevil’ personality disappeared overnight, and she became alarmingly lethargic. Doctors nearly lost her on an operating table.

In the aftermath, her parents Vito and Jo barely slept, pricking blood from her toes on the hour, day and night, to check if her glucose levels were too high or low.

 "The struggle we have with Emilia is she just appears her happy little self," Jo said. "For a child that can’t speak to you and say ‘Mummy I feel faint or I’ve got blurry vision’ – we are blind ourselves."

But revolutionary new technology is saving them. Under her skin, Emilia now has a sensor inserted. It reads her blood sugar level continuously, and sends the data by Bluetooth to her parents’ phones. If her levels get too low, or too high, an alarm goes off. 

"Without that piece of equipment… we’d be in a loony bin because Vito and I wouldn’t be sleeping,” Jo said.  "This continuous glucose monitoring system (CGM) is absolutely a life saver not only for her – literally – but for us as parents to be able to function normally."

But sanity has come at a cost. CGM systems are not publicly funded, and it costs the family $10,000 a year. In Australia, the technology is free for all type one diabetics aged under-21.

Diabetes New Zealand wants funding here for everyone. CEO Steve Crew said people shouldn’t be relying on antiquated finger prick meters. “It’s kind of like going from the ol’ HQ Holden to the Audi,” he said.  “We see them as not a luxury but a necessity.”

PHARMAC, which assesses medicines for funding, said it would welcome an application from manufacturers.

However Medicines New Zealand, which represents the pharmaceutical industry, said that didn’t offer certainty. “An application does not guarantee that PHARMAC will be able to fund any treatment for diabetes, even though other first-world countries already do,” General Manager Dr Graeme Jarvis said.

The government says diabetes – type 1 and 2 - is the largest and fastest growing health issue in New Zealand.

  •  260,000 Kiwis have diabetes – 1 in 16 people
  • That number could double in 20 years
  • Maori, Pacific Island and South Asian populations are worst affected
  •  It can lead to kidney failure, blindness, amputations, heart disease
  • Complications cost taxpayers $1.3 billion every year

Despite this epidemic, New Zealanders with type 2 diabetes don’t have access to some innovative new medicines which are funded overseas. Medicines New Zealand said five cost-effective medicines recommended by a specialist technical committee for public funding are languishing on a waiting list.

Dr Jarvis said it appeared PHARMAC lacked the budget to fund more than 90 medicines endorsed by the Pharmacology and Therapeutic Advisory Committee, including the five diabetes medicines.

"Australians shake their head at me when I talk about the medicines waiting list," he said. "They say ‘we’ve got those medicines, why don’t you?’ It’s crazy. It really speaks of the need to adequately fund PHARMAC."

Dr Jarvis said spending on some of the innovative treatments would prove to be economical both now, and in the future, as they reduce complications – something Emilia’s parents know well. They said monitoring their daughter continuously allowed them to act sooner if her blood sugar level was heading the wrong way.

"If you’re always being reactive to those [blood sugar] highs and lows it’s going to cause long term damage to her organs, to her eyes, to her brain. That’s why diabetics lose their fingers or their limbs or they go blind," Jo said.

They are hopeful that continuing innovation will mean Emilia can live a healthy life – they just wish they had some help to pay for it.

This story was created for Medicines New Zealand to raise awareness of the waiting list for medicines and the issues around funding. Check out priorities.nz for more info.