DANII FOUNDATION - Danii Meads Barlow Foundation

DANII FOUNDATION
ABN: 157 880 147
C/- Suite 1 / 111 Wicks Road, North Ryde NSW 2113
Email:donna@danii.org.au Ph (02) 9888 5555
Ms Sussan Ley
Minister for Health
Parliament House
CANBERRA ACT 2600
Dear Minister Ley
National Diabetes Strategy: Consultation
On behalf of the DANII Foundation I extend my thanks to you as Health Minister and to Prime Minister Abbott for
recognising the importance of a National Diabetes Strategy and honouring your election commitment.
The DANII Foundation was established in honour of Daniella Meads- Barlow who died in her sleep as a result of nocturnal
hypoglycaemia aged 17. Daniella was a type one diabetic and a beautiful and talented young woman with a full life ahead
of her.
In the 3 years since Danii’s tragic death the foundation has grown from strength to strength. We have attracted thousands
of followers and supporters and alongside our national support and advocacy role hold a gala fundraising ball in June every
year. It is the Foundation’s clear purpose to ensure there is not another unnecessary death as a result of substandard
monitoring practices.
As you would be aware unlike type two diabetes, type one diabetes is not a lifestyle choice. You can't get it from eating too
much sugar. It is an autoimmune disorder, caused when the body’s own immune system attacks the pancreas, rendering
it permanently unable to produce insulin.
There is no cure. 80% of those diagnosed have no family history. Most are young children. It is a life sentence of endless
needles, finger pricks and carb counting. Management of type one is intense, round the clock, intrusive and vitally
important.
Blood sugar that is too low will cause disorientation, loss of consciousness, coma and, if unrecognised or untreated- death.
Low blood sugar levels whilst sleeping are particularly dangerous and can also be fatal. Blood sugar that is too high has an
immediate threat of DKA (blood that is too acidic) which is also life threatening. It is a fine line and a balancing act that
diabetics walk every day to try to maintain normal blood sugar levels.
Current Management of Type One Diabetes
To better manage their diabetes, type one patients need comprehensive information about the way their body's blood
glucose levels trend. The current recommendation (supported and funded by the Australian healthcare system) is for type
one diabetics to check their blood sugar levels by conducting approximately 10 finger pricks a day (upon waking, before
every snack or meal, before bed and at 2am).
Whilst this was recognised as best practice, thankfully technology has advanced. The 10 small snapshots, that does not
allow the identification of blood sugar level trends has been enhanced with Continuous Glucose monitoring (CGM).
Continuous Glucose Monitoring
Continuous Glucose monitoring (CGM) is not only clinically superior to current funded practices it is also far more cost
effective. The cost of a CGM monitor and related consumables is $4474.00. Considering the current cost of managing a
type One diabetic costs over 3 times as much at $16,000.00 it is essential that government fast-track the adoption of
CGM technology; first to improve the lives of those with type one diabetes and secondly to reduce precious health
funding and divert it to those in need.
CGM is conducted by the wearing of a sensor (such as a Dexcom or the Medtronic device) that checks the blood sugar
level every 5 minutes, 24 hours a day. It allows for trend identification, prevention of high and low blood sugar events, and is
the best way to prevent hospitalisation for common illnesses, as it allows for better management and control at home.
/…2
Better day to day management is the best prevention for long term complications. It also allows type one diabetics (and
their families) to sleep at night, knowing they will be alerted by their CGM if their blood sugar is dangerously low, a critical
factor in saving the lives of those living with type one diabetes.
In addition to the financial and health implications just described, a diagnosis of type 1 diabetes also has a profound
emotional impact on the entire family. Parents of children with type one diabetes face grief, fear and desperation in coming
to terms with the diagnosis of a chronic medical condition that has the real possibility of shortening your child's lifespan by
decades.
CGM technology provides type one diabetics and their family’s peace of mind. The ability to know at a glance of the
CGM receiver that your child is not going dangerously low or high and that they will wake up in the morning obviously
has benefits that are not quantifiable.
Evidence to Support CGM
Available pump and CGM technologies delivering insulin and continuously monitoring glucose levels delivering in
real time every 5 minutes, along with insulin suspension capability, deliver both patient and taxpayer value. These
technologies are also the essential components of an automated closed loop system or ‘artificial pancreas’. It is
critical that all of these components are subsidised, otherwise future technological advances in diabetes care
providing improved clinical and quality of life benefits, will remain out of reach for adults and children with T1D.12
The message is Clear, the Statistics are clear. The benefit financially for Government saving in the Health System
together with a safer Quality of Life for all that live with Diabetes:

84% Hypoglycaemic events3

60% Nerve damage (neuropathy) 1

63% Eye Damage (retinopathy) 1

54% Kidney Damage 1

41% Cardiovascular Damage1
Diabetes Control and Complications Trial (DCCT) Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term
1
complications in insulin-dependent diabetes mellitus. NEJM. 1993; 329(14):977-986.
2
Section 7 clinical study. Data on File. Bayer Healthcare, LLC
3 Bode BW, Steed RD, Davidson PC. Reduction in severe hypoglycemia with long-term continuous subcutaneous insulin infusion in Type 1 diabetes. Diabetes Care
1996;19:324-327
Response from Australian Families
The DANII Foundation undertook a petition and gathered 6500 responses from those with type one diabetes and their
families. The results were extraordinary.
Here are a small cross section of responses

Daphne Lewis: My husband died at 42 from this disease - lost eyesight, kidney function, two legs, dry gangrene
in fingers, vascular dementia and last but not least, his life.

Sarah Taylor: CGM technology is vital to ensure the good health of people living with T1D, and can prevent
"dead in bed" incidents.

Karen Gates: My son died a year and 4 months ago aged 19 from his diabetes, he went to bed one night and
didn't wake up. He always struggled with highs and lows, this is vital to the management and safety of people
with type 1, especially kids, it's so very hard to keep your head around it all.

Sarah McDonald: I work full time as a deputy principal, my husband is a police officer and every day we wake
multiple times a night to manage our daughter’s diabetes. With Dexcom we can often get a more restful sleep
allowing us to be functional members of society.

Susanne Gergely: I would love my granddaughter to be able to use this technology all the time instead of only
occasionally when they can afford it.

Rebecca Oliver: My 10 yr old son has type 1 diabetes and we are a low income family that just cannot afford
the CGM. It would make life so much easier and safer for my son. It was not his fault he got type 1 diabetes
and it’s definitely not fair this fantastic technology is not available at a reasonable price.

Sheree Colquhoun: I have a 3 year old son with type 1 diabetes, we use this technology when we can afford it
and it has already alerted us overnight to potentially life threatening hypos
/…3

Ben Poprawski: My daughter is a type 1 diabetic diagnosed at age 5. This device is not a luxury item, but one
which can improve quality of life of young type1s, their families and prevent premature death and
complications of this horrible disease. If it's, however, currently out of our financial capabilities. Please make
this an affordable option for those who need it.
Recommendation:
The Government make an immediate decision to subsidise CGM glucose sensors for high risk children and adults
with type one diabetes through the National Diabetes Services Scheme (NDSS).
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.
Yours sincerely
Donna Meads-Barlow
Founder DANII Foundation
17 May 2015