Good Afternoon members,
Thank you Julie and Kathryn for your posts. The executive team and I read this forum daily and your comments are appreciated as are the contributions of all members who take the time to share their thoughts. We appreciate your input and in particular the usefulness of increasing our ability to support more conversations in addition to our provision of information and updates. Ways of working and communicating so that we all go on the journey together. Advocacy is a great case in point where we have tended in the past to provide information at the start and finish of related activity and there is certainly benefits that could accrue from working more closely and interactively with our community.
This Live Your Life community platform was launched specifically to ensure that everyone has the opportunity to be an active part of something strong, positive, supportive and inspiring. A community forum in which you can participate anywhere and anytime and where other members and the organisation understand your perspective and know how you feel.
You may have recently received an email indicating that this month's "topic of the month" is advocacy. This is our first step in developing a community and two way communication with members with a passion for advocacy. There are focus groups you can register for and I will be hosting a webinar in the next couple of weeks to update members about our current advocacy focus and efforts. I would encourage as many members as possible to attend or if this is not possible for whatever reason to take the opportunity to watch the recording.
The foundation of our advocacy activity is based on the voice of our members. We undertake individual advocacy on a range of issues, both medical and non-medical (the issues arising from diabetes can extend far beyond the medical into workplaces, schools, services and bureaucracy). These issues, and those that we seek your opinions on through forums, events, newsletters, and social media, are collated and analysed to identify the larger systemic issues that are impacting members. For example, we know that in-hospital diabetes management is a priority because we have heard from many people about their real-life experiences - we continue to lobby and work with State Governments on that issue. We have worked hard to increase the affordability and accessibility of diabetes technology – and in conjunction with Diabetes Australia lobby the Federal Government on those subsidies, and there have been great advances in that area in the last five years. We are very aware that there are still large gaps and efforts continue on this front.
Similarly, discrimination, licensing, education, accommodation, legislation and a wide range of issues create problems for some people living with diabetes. We take these issues regularly to Federal and State governments and other agencies. As you rightly point out, Diabetes is a complex condition its impacts are felt far and wide. We actively seek and value the input of our members because every voice helps to make life better for all people living with diabetes.
Diabetes NSW & ACT is your organisation. We are here to support you every step of the way through your diabetes journey and together we can make a real difference to the lives of people living with diabetes. There are many issues that take time to address and we sincerely thank you for taking the time to be an active part of the conversation
Warm Regards
Sturt
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Sturt Eastwood
Chief Executive Officer
Diabetes NSW & ACT
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Original Message:
Sent: 03-03-2021 06:41
From: Kathryn
Subject: CGM Petition
Hi Julie,
Thankyou for your post.
I'm very grateful to be supported by the Australian health care system. Of late DA seems to be asking what we want. I want advocacy so there is equality in health care spending. For over 30 years I have appreciated the organisation being there - but I would rather less recipes and articles on managing diabetes, that reaches saturation point fairly quickly once diagnosed.
I have no real idea what DA are doing from advocacy point of view. You are not the first to raise it in the forum. I see no evidence that DA actually grasp what we are asking for or understand the role of advocacy. Some organisations are much more successful than others at this. You could look to ACON or cancer council as a brilliant example's of organisations achieve change for their members.
I would like them to lead a consistent and targeted plan that rallies and involves the members. It may take yeas of serious ongoing pressure and lobbying. It would be good to hear what the plan is - when and how it is executed and what we and our family members can do to provided continued support.
From a Public health perspective I know our population is small but the cost savings is obvious - we have a strong case, it will save the health care system money long term. We just need to get seen. Maybe a well know patron, media campaign, organised and supported partitioning would work. I work in health - most of my colleagues are shocked at what I spend every year, they assume the government covers it. Many other disesase's are better supported. I believe the wider community would back us us.
Diabetes is a complex disease with many layers of expense, has this been represented? Perhaps there are different approaches to get support for type ones. If we got sensors added to the safety net - or have our own health care spending cap developed - that captures and limits the spending on health care per year. Or, all type ones get a concession card? this would recognize our conditions serious nature. I have heard people suggest type ones should get NDIS approval. calling diabetes disabled raises issues for sure - but would access a funding path. Sometimes its the label that creates access to funding.
Natasha and Erin - I would ask you directly - comments such as Julie's and mine - do they make it to you managers desk, your CEO's desk? How does the feedback get captured and treated? Do they agree with us? Do these comments upset them? Maybe there is much being done and the issue is communication?
thanks
Kath
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Kathryn
Original Message:
Sent: 01-03-2021 12:04
From: Julie
Subject: CGM Petition
I would like to see Diabetes Australia advocate for CGMs to be Government subsidised for all Type 1 Diabetics. As an outcome of the recently tabled petition has not yet been communicated, I assume the recent petition was not accepted in the House of Representatives. Unless there was other paperwork we did not see, I think the petition needed to present more than just the cost of CGM systems.
I agree with a comment Diabetes Australia made months ago regarding presenting facts on the price of CGMs, and I believe any submission to Government needs to include other facts about Type 1 Diabetes and compelling evidence on why CGMs are so critical to Type 1 diabetics. For example, my thoughts on the content of a submission to Government are:
- Type 1 diabetics represent only 10% of all Diabetics.
- Type 1 diabetes is very different to Type 2 Diabetes – the difference needs to be succinctly and irrefutably explained.
- Type 1 diabetes is an autoimmune condition that cannot be prevented and there is no cure. As a result, Type 1 diabetics are insulin dependent for the rest of their lives after diagnosis.
- Type 1 diabetes is a life threatening condition and needs to be monitored closely 24/7;
- The Government is currently funding Type 1 Diabetes sub-groups e.g. those under 21.
- It could be seen as discriminatory not to afford all Type 1 diabetics the same assistance, and for the full duration of this life threatening condition;
- CGM is a more effective tool than other methods used achieving good glucose control in Type 1 diabetics;
- Achieving good glucose control reduces the impact of longer term health issues in Type 1 Diabetics.
- The cost of GCMs is prohibitive to many diabetics living with this life threatening condition, and a significant ongoing financial burden to others.
- Based on the current number of Type diabetics (using Diabetes Australia information and/or Health Department information):
- the annual cost to the Government of subsidising GCMs is $x
- the annual cost to the Government of those Type 1 diabetics not currently eligible for Government subsidies is $x
- this is an increase of $x to the Governments current Type 1 subsidy program
- this additional cost to Government represents 0.0001% (tbc) of Government annual health system expenditure.
- Benefits to Type 1 diabetic recipients of this additional subsidy are:
- better glucose control on a day to day basis
- better quality of life through reduced stress associated with Type 1 diabetes management
- reduced risk of experiencing or dying from life threatening hypoglycaemia episodes
- ability to avoid or reduce longer term complications requiring hospital treatment
- Benefits to Government of all Type 1 diabetics receiving this additional subsidy:
- a significant reduction in costs on the health system resulting from the avoidance or reduction in longer term complications requiring hospital treatment through Type 1 diabetics being able to better manage this condition on a day to day basis.
Of course, statistics and other evidence to support the statements above would need to be included in any submission put forward to Government.
I implore Diabetes Australia to advocate on behalf of all of us for CGMs to be Government subsidised for all Type 1 Diabetics.
Are there any other thoughts from forum members?
Regards,
Julie