I poured my heart into the column I wrote for Insulin Nation last week, which you can read here. I questioned why I am made to feel guilty for using more test strips than what is subsidised through our National Diabetes Services Scheme (NDSS) here in Australia. I knew it was a topic that I felt strongly about. What I didn’t expect, however, was the overwhelming response from other people who felt exactly the same way that I did. Individuals, parents, children and people commenting from the other side of the world.
Over on Twitter on Saturday morning, a tweet from my #OzDOC friends Kate and Melinda at Twice Diabetes caught my attention. In response to my column, they suggested to a concerned Aussie d-parent that they could apply for a “high use exemption” from the NDSS limit with a doctor’s sign off. Another d-parent joined in the chatter, telling us that she had a letter from a paediatrician outlining the necessity for “high use” testing.
Look, that’s great. I am really pleased to hear that these individuals were able to access their supplies in their time of need. But it’s not good enough. Why should these individuals have to go and justify the need for these supplies? The very supplies that are keeping them, or their children, alive and healthy. By putting people into boxes such as “high use,” we are only further demoralising them. More than likely, they will go to their doctor. They will face a string of questions and concerns over whether they are managing their diabetes well enough. They will face judgement. And more than likely, they will feel inadequate.
In my opinion, there is no such thing as “high use” where Blood Glucose Monitoring is concerned. In my opinion, regular Blood Glucose Monitoring is in everyone’s best interests. It gives me a sense of control and peace of mind over my diabetes. It keeps me safe and healthy as I carry out my daily activities such as work, exercise and leisure. The very activities that can have implications on others if not monitored adequately.
I have gone through burnouts from diabetes. I have gone through periods where I have wanted to give up, and periods where I have lost the will to monitor my blood sugar levels. And during those tough times, the last thing I need is to be encouraged to test less.
I don’t want to place all of the blame on Diabetes Australia or the NDSS. I am really grateful to live in a country where we are blessed with such a good healthcare system. I also blame the meter companies who over inflate the prices, and make a profit off of our disease. But that’s another blog post altogether.
Personal thanks to Craig at Insulin Nation for your support of this story all the way from the US, and for pushing it to Diabetes Australia and the NDSS on social media outside of your work hours. I was also extremely pleased to see that I had a small victory. The NDSS agreed that this quote on their website did indeed make individuals like myself feel guilty:
“There are limits to the number of products you can purchase on the NDSS. If you reach the limit, we will contact you to give you information to help you manage your diabetes.”
The NDSS updated their website on Friday as a result of my column. The limits to diabetes supplies accessible through the NDSS are now clearly specified (they previously weren’t), and there is a much nicer wording for those who require supplies beyond the limit subsidised:
“We understand that some people may require more products to manage their diabetes. If you require further assistance with accessing products to manage your diabetes, please contact the NDSS on 1300 136 588 or at firstname.lastname@example.org.”
Thanks to Diabetes Australia and the NDSS for reading the article and taking my opinion on board. I do feel really proud to stand up for all Australians living with diabetes and to walk away with a small victory.
However, we still have a long way to go.