Michelle Rowland (Greenway, Australian Labor Party, Shadow Assistant Minister for Communications) Share this | Hansard source

During the parliamentary recess, I had the opportunity to meet with some families in Greenway whose lives have been changed by the diagnosis of a family member with type 1 diabetes. The life of Donna Meads-Barlow, founder of the Danii Meads-Barlow Foundation, was changed in the most tragic of circumstances. Donna's daughter Danii was diagnosed with type 1 diabetes at the age of five. She and her family managed her disease, and Danii grew into a beautiful, outgoing teenager with gorgeous strawberry blonde hair. One night in November 2011, Danii went to bed and never woke up. Donna asked me if I had ever heard of the syndrome known as 'dead in bed'. I had not, but I came to understand from several constituents who had contacted to me in the weeks preceding our meeting that it means the parents of children with type 1 diabetes cannot sleep with their bedroom door closed.

The Joyner family was one of many who had contacted me about type 1 diabetes, a disease which has no cure and is not attributable to lifestyle factors. Emily Joyner is 18. I will quote from the words of her mother, Sue:

My eldest daughter Emily was diagnosed in 2004 with Type 1 Diabetes at the age of 8. We have no family history of type 1 diabetes so this came as quite a shock. We did not know then what our family would need to deal with, let alone Emily.

In the last 10 years alone, Emily has had to do over 21,840 finger pricks to check her blood glucose level, insert over 1,210 cannula sites in her stomach for her Insulin Therapy Pump to avoid multiple injections daily. Emily and us, her family, have never slept more than 3 hours at a time as we have to check her blood glucose level through the night to make sure she does not fall into a coma due to either low or high blood glucose levels. This is also known as Dead In Bed Syndrome.

Children should not have to endure this. Their families should not have to live like this.

I want to thank Emily; her mum, Sue; and the local residents who shared with me how they do indeed endure and the reason why Emily's quality of life has improved. The answer is continuous glucose therapy, or CGT. Emily was kind enough to show me the sensor that sits subcutaneously on her tummy and measures her blood glucose level on a continuous basis every five minutes. A transmitter sends information to a receiver which shows the Emily's blood glucose level, and her condition can be managed so much more effectively. Her mum writes:

I cannot tell you what a peace of mind this has brought to our family. Not only does it take the guesswork or fearfulness of what level Emily may be, but it is like being able to see inside her body and watch what is happening and being able to control it more closely. This amazing technology lets you see what we were not able to before, but also alarms us to any potential low or high blood glucose level before causing danger to Emily.

As I did my own research after our meeting, I came to appreciate the real stumbling block for this medical breakthrough not being more widespread: its cost is around $5,000 a year. Without a subsidy under the National Diabetes Services Scheme or costs defrayed under the PBS, it remains prohibitively expensive for many families. I also note estimates from Diabetes Australia that the cost to government of managing type 1 diabetes in individuals is $16,000 a year. I doubt there would be anyone in this parliament who would not want sufferers of this disease—and I have seen estimates of there being over 130,000 Australians with type 1 diabetes—to receive the treatment they need. This was the central message of the family members who visited me, and I thank them sincerely for doing so.

I realise there are what seems like countless issues that demand our attention as local members. This one did demand my attention and it got it. I raise it today for the fact that all of us would all be representing some sufferers and their families, and we would all want to see them receive treatment that could prolong an improved life for themselves and those who love them.

If I can end with some words from Donna Meads-Barlow and commend her for advocacy. I commend my local residents for their advocacy also. Donna said:

The DANII foundation would be happy to work in partnership with the government to implement evidence based technology, improve the quality of life of those living with type one diabetes and reduce the overall costs to government of managing this disease.

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