Australian mother who lost daughter from dead in bed syndrome launches CGM initiative

The mother of a girl with type 1 diabetes who died from dead in bed syndrome has launched a campaign to have continuous glucose monitoring (CGM) devices subsidised in Australia.

17-year-old Danielle Meads-Barlow from Chatswood, North Sydney, died in her sleep four years ago, shortly before beginning her higher school certificate. Unfortunately, little is known about the cause of her death.

Dead in bed syndrome is a rare, poorly understood diabetes complication. It is characterised by the sudden and unexplained death of young people with type 1 diabetes, who might seem completely fine before bed.

One theory behind dead in bed syndrome is that nocturnal hypoglycemia triggers disturbances in heart rhythm, but a lack of evidence means that a cause of dead in bed syndrome cannot be confirmed with certainty.

Donna Meads-Barlow, Danielle’s mother, is pleading with Australian politicians to provide financial support for CGM devices. She launched the Danii Foundation to “raise funds to lobby industry and government to introduce latest technologies, at an affordable price, that assist in the management of type 1 diabetes.”

In the UK, people with diabetes can find out if they qualify for use of a CGM on the NHS, but in Australia, “CGM devices and sensors, which are generally used with insulin pumps, are not currently available for Government subsidy.”

CGM systems measure glucose 24 hours a day and can be used whether you wear a pump or administer insulin with daily injections. CGMS can also provide this information when you’re asleep, and include alarms to signify when glucose levels are too high or too low.

In Australia, the device has an annual cost of roughly $5,000. This includes an initial fee of around $1,200 and further upkeep costs of $480 per month.

Ms. Meads-Barlow said subsidising CGMS would be a “great investment” for the Australian government, especially as “data from 2010 showed that only about half of Australians with diabetes were achieving adequate control of their blood glucose levels.”

Several families across the country have joined the Danii Foundation to support the mission, posting pictures of their children holding up signs saying “Make affordable CGM care for diabetics on the NDSS (National Diabetes Services Scheme) or PBS (Pharmaceutical Benefits Scheme).”

Ms. Meads-Barlow told Daily Mail Australia that making CGMS less expensive was “my final promise to my daughter.”

‘Young angels shouldn’t be dying.,” Ms. Meads-Barlow said. “None of us are ever supposed to bury our children. Give us the opportunity that we have to save our children and not let them pass in the night silently, like Daniella did.”

Picture: 9news.com.au

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Jack Woodfield

Jack is Editorial Manager of Diabetes.co.uk. He works hard, plays fair and sleeps whenever possible. He has type 1 diabetes, doesn't mind being called a "diabetic", and once won a talent show for dancing to Dario G’s 1997 hit “Sunchyme”.

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