Type 1 - Open Forum

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  • 1.  Policy and Advocacy we need your help

    Posted 30-07-2020 15:16

    An important part of what we do at Diabetes NSW and ACT is to advocate on behalf of people living with diabetes.  This is not always about diabetes!

    When someone is diagnosed with diabetes, they are diagnosed with more than a medical condition. There are many other hurdles and issues that they are faced with.  Some of these are unique to the person, but most are faced by many other people also living with diabetes.

    By bringing people together as a community, we want to be able to identify common problems and issues, and work to make changes in our community.

    Common areas are discrimination, access to services, education, insurance, and workplace issues.  We can work to resolve these issues on an individual level, but we can also collate the experiences and voices of our members to make a strong and loud argument to our Governments and agencies.

    Our ability to effectively advocate for changes depends on hearing your voice, so we want to invite you to share your experiences with us.  If there is a situation in your daily life where you face additional pressures, please let us know in this thread, and help us to shape change.

    Live Your Life Community Team
    Natasha & Erin

  • 2.  RE: Policy and Advocacy we need your help

    Posted 31-07-2020 07:04
    Its great that Diabetes Australia has asked this question.Travel insurance can often carry high additional premiums for T1 people.
    Pre Covid 19 I travelled  regularly and in some cases paid 30% extra as a T1 sufferer. I have no long term side affects of T1 and felt the pre existing conditions additional premiums were often excessive
    Also subsidised finanial access to devices that help in T1 management is essential eg pumps and CGM for all not just concession card holders

    Sent from my Samsung Galaxy smartphone.

  • 3.  RE: Policy and Advocacy we need your help

    Posted 01-08-2020 16:29
    I agree with Gillian that advocacy for pumps and CGM is required.

    In 2015 and newly on to CGM after 49 years of T1, I started writing to politicians about the issue.

    I am one of those individuals who is hypo unaware largely because of the decision in 1989 to stop subsidising access to porcine insulin through the PBS. Research coming out of the UK at the time showed that about 10% of T1s could not detect the hypo signs due to being placed on human insulin. I took part in a clinical trial and got back onto porcine insulin but that took 2 years of agitation. I had a number of near misses in that time.

    Later I started the same process of agitating for CGM after a friend wrapped his car around a tree. He was hypo unaware also.

    The agitation plus support from DA and Medtronic has partly paid dividends first with under 21 year olds getting access to CGM and later (now) those on pensioner cards. But, the cost is horrendous. I pay $3000 per year for the sensors. The difference between my income and the pensioner health care card eligibility level is much less than the $3k for the sensors.

    So, advocacy by all groups interested in saving the health care system very large amounts of money is called for. Write to the politicians. The health care costs of kidney failure, amputations and blindness, for example, are significantly higher than the costs of avoidance through subsidies for pumps and CGM.

    Adjunct Professor David H McKinnon
    School of Education
    Edith Cowan University
    Joondalup 6027, Perth
    Western Australia


    This e-mail is confidential. If you are not the intended recipient you must not disclose or use the information contained within. If you have received it in error please return it to the sender via reply e-mail and delete any record of it from your system. The information contained within is not the opinion of Edith Cowan University in general and the University accepts no liability for the accuracy of the information provided.

    CRICOS IPC 00279B

  • 4.  RE: Policy and Advocacy we need your help

    Posted 01-08-2020 08:15
    I to have travelled the world and am type one, well controlled and have never had a problem over seas but would not travel without insurance.

    Even using the same travel insurance company made no difference to the cost, so started searching and found a huge difference in pricing.  Some insurance companies trade on their brand name to over charge.  Increase their profits for share holders.

    PS: the cheapest I found that I was confidant with, was Australia Post. 

    Diabetes Australia,  do you get access to claim statistics for type one's?

    Regards Don

  • 5.  RE: Policy and Advocacy we need your help

    Posted 01-08-2020 19:43
    I am another one who would love to see strong advocacy for CGM subsidies. It is such a fantastic tool, but the average person can't afford it. I am trialling it at the moment and to honest it will be cost that will be the decider. We want to retire soon, however I will need to work to be able to afford CGM.


  • 6.  RE: Policy and Advocacy we need your help

    Posted 01-08-2020 21:56
    I totally agree about pump and CGM subsidies. I have just started on CGM because I live on my own and knowing that it will give me an alarm if I go low (or high) overnight is helping me sleep better. I'm intending to start on a pump too, but there's such a backlog for the diabetes clinic due to covid-19 that it is taking an awfully long time to organise. I'm very worried that I won't be able to afford to keep going with it down the track as I work two part-time jobs and one of those may not continue past next year. I won't be able to get the pension for another six years. The cost of the CGM and private health insurance, which I started recently to cover the pump cost, is my biggest living expense.


  • 7.  RE: Policy and Advocacy we need your help

    Posted 02-08-2020 10:03
    Interesting that the "free" health insurance that comes with credit cards requires T1s to pay a premium.

    Seems  curious we don't even get subsidised for CGM to the equivalent cost of the strips we don't use anymore.


  • 8.  RE: Policy and Advocacy we need your help

    Posted 28-08-2020 15:45
    Thank you all for your contributions so far.

    I have received the below response from our Policy and Advocacy Manager

    Cgm - the last five years have seen a lot of progress with rolling out better access to CGM, but there is still a lot to be done. We will continue to lobby for affordable access for everyone who needs CGM, and are aware of the pressures on people who are not on concessions, are moving off the under 21 subsidy, and those who post-pregnancy are no longer eligible.  The cost of CGM is prohibitive, and there are many people who would greatly benefit from the technology who still cannot afford it.


    Pumps for those who are not covered under private health insurance are also a significant,  and sometimes impossible,  expense.  We will also continue to advocate for this vital technology. 


    Travel insurance  is an area we find greatly inconsistent.  The best tactic is to shop around. There are some good insurers who will look at management of your diabetes, others who will simply make the product unaffordable.  Aspects such as age and other conditions will also come into play. Unfortunately,  thus us another area that is going to be very uncertain when post-covid travel resumes. All travel insurance will be affected by the pandemic, and we will be watching closely to see if diabetes is adversely affected in new covers. Please let us know your experiences when travel finally gets back to normal!


    Health insurance was recently revamped to deliver tiers. In theory, this sounded nice and transparent.  However,  we have heard of some disturbing ways that some insurers discontinued products, increased prices etc. Again, shop around!

    Live Your Life Community Team
    Natasha & Erin

  • 9.  RE: Policy and Advocacy we need your help

    Posted 28-08-2020 16:44
    Thanks for the update.