Diabetics at risk of dead in bed syndrome

Hannah Ryan
·3-min read

In November 2011, 17-year-old Daniella Meads-Barlow went to bed and never woke up.

The teenager fell victim to "dead in bed syndrome", which refers to sudden, overnight deaths of young Type One diabetes patients without any previous history of long-term complications.

Now her parents are fighting to make sure other Type One diabetics do not meet the same fate.

Through their organisation, the Danii Foundation, Donna and Brian Meads-Barlow launched a campaign on Monday to demand affordable access to continuous glucose monitoring (CGM) devices in Australia.

Unlike the traditional finger-prick blood glucose reading, CGM devices test the wearer's glucose levels every few minutes.

If levels fall too low or too high, they issue an alert to the wearer and carers through their phones.

The Meads-Barlows say they only learned about CGM technology when Daniella died, and they believe it would have saved her life.

The Australian government fully subsidises the device for people who are under 21, pregnant or planning a pregnancy, or have concessional status.

But for tens of thousands of others, the devices cost thousands of dollars a year.

For Libby Wilson, a 21-year-old marketing professional who was diagnosed with Type One diabetes at 18, the device has been life-changing for her and those close to her.

Ms Wilson previously worked as a hairdresser but had to give it up because she could not control her blood sugar levels. She could not afford a CGM device, and did not know she was entitled to a free one because of her age.

When she was first diagnosed, her doctor told her to try to wake up in the middle of the night to monitor her blood sugar.

"I was doing blood tests at 3am," she said in an interview. "I'm a very deep sleeper so my Mum was helping me do it."

Now, with the help of a scholarship from the Danii Foundation, she has a CGM device that measures her glucose as she sleeps, alerting her mother and boyfriend if her levels fall too low or too high, and she says she can't imagine life without it.

"It's such a stress not having something that's a back-up for you," she said.

"It's honestly the greatest gift for myself, but not even for me, for my Mum who stresses if I've gone low and she's not there."

The #CGM4All campaign is calling for all Australians with Type One diabetes to have affordable access to CGM technology.

"Our vision is for a world where people with Type One diabetes live without the fear of never waking up," Danii Foundation CEO Cassandra Cunningham said in a statement.

The Department of Health said the eligibility criteria had been expanded earlier this year to include Type One diabetes sufferers over 21 years old with a concessional status.

"This change will increase the total number of people eligible for CGM products to over 58,000," the department said in a statement.