Once a month, Sweet Life co-founder Bridget McNulty unpacks something personal about life with diabetes. This month, she opens up about diabetes advocacy…
I resisted diabetes advocacy as long as I could. To be honest, I was waiting for someone else to pick it up and run with it… Someone who wasn’t me. But then the urgency to form a diabetes advocacy organisation in South Africa became too great to ignore, so SA Diabetes Advocacy was born. It’s an NPO (non-profit) that’s made up of all the organisations of people with diabetes in South Africa, and it has started gathering great momentum.
A big reason for the momentum is the Diabetes Advocacy training we offer – a free, online 4-week course that covers the basics of diabetes in SA, diabetes education, advocacy strategy and collaboration. If you’re interested and you haven’t yet signed up, you can sign up here! The May and June courses are full, but there’s still space in October.
What’s been so wonderful about the advocacy training (expertly facilitated by Kirsten) is that it empowers individuals with diabetes from all over SA to run their own diabetes advocacy projects, rather than waiting to join one that interests them.
Diabetes advocacy projects
If I’m honest, this is what we need to work on the most – talking about our advocacy projects. In my mind, though, I’m waiting for us to ‘complete’ them, or have something to report on… It feels odd to report that we’re midway through a project. But maybe that’s just me – let me share what we’re midway through with you today, and you can tell me what you think.
Type 1 focus
Oh my goodness, how are we still having this fingerstickfree conversation?! Honestly, we started with this project because we thought it would be an easy win (haha), because it was only Type 1s, only medical aids. I was interviewed on Carte Blanche about diabetes technology being funded (or not) by medical aids, and the episode airs on Sunday 9th April. On the back of that, we are going to invite key medical aids and manufacturers to a round table later this year, facilitated by the wonderful Prof. Partha Kar from the NHS, who advocated for NICE to cover CGM for all Type 1s in the UK.
The trouble is that until some level of CGM (or flash glucose monitoring) is covered for Type 1s on medical aid, the prices won’t come down enough for the public sector to consider it… Or for Type 2s to be able to join in, so we really have to knock this first wall down. As it stands, Discovery is the only medical aid offering a CGM Benefit for all Type 1s.
Type 2 focus
Diarrhea is a common side-effect of regular metformin, but long-acting metformin (that eliminates this side-effect) isn’t often available in the state sector. For those who need it, this drug can be life-saving, as it means they’ll continue taking their medication – non-compliance (not taking the medication) is an issue when medication makes you feel ill. We want to find a way to get long-acting metformin on the state sector formulary, for those who need it.
This year our main focus has been on getting a counselling social worker for the Red Cross Children’s Hospital Diabetes Clinic . We have scoped out the job description and hours for a counselling social worker, and are currently looking at how to attach research to the project so that we can get international funding to make it sustainable into the future.
We are also fundraising for it by creating a calendar of pictures drawn by the kids at Red Cross, and sold at top schools in the Southern Suburbs. We’re looking for advertisers to advertise in the calendar, which would pay for the printing costs and for the remainder of the counselling social worker’s salary. While we initially thought this role should be covered by the hospital, it’s apparently not an urgent enough priority to get government funding. There is also precedent for a non-profit covering a counselling social worker in a clinic, as the Cystic Fibrosis Clinic at Red Cross does that.
Diabetes educator focus
There is a frightening lack of diabetes educators in South Africa, and a big reason for that is because they’re not a formally recognised role with the Nursing Council. So nurses aren’t encouraged to specialise in diabetes.
Diabetes nurse educators need to be a formally recognised role. The Minister of Health says that whole person wellness is the way to go, and we don’t need specialist diabetes nurses. Prof Joel Dave (who heads up endocrinology at Groote Schuur) says access to diabetes educators will have the biggest impact on the lives of people with Type 2 diabetes. We have already emailed the Nursing Council to ask for a meeting and start the ball rolling to recognise diabetes educators as a separate sub-speciality. We need to negotiate with them, and advocate for certain posts to be made available in every province.
A volunteer lead is needed for this project.
Food insecure households focus
For some people with diabetes, food insecurity is their biggest issue. You shouldn’t take insulin if you don’t know where your next meal is coming from, but you need to take insulin if you have Type 1 diabetes. Food grants and disability grants aren’t available to them, but Lion’s Clubs across South Africa have feeding schemes, and a particular focus on diabetes. What if we connected each public clinic with a specific Lion’s Club so that individuals who are food insecure could have access to their feeding scheme? This project is still in the idea phase, but we’re very excited about it.
Accurate education in school textbooks
And then, of course, there’s this terrible misinformation printed in the Grade 6 Life Sciences textbook. We have already spoken to the Western Cape Education Department, who said they’ve sent the complaint to the Curriculum Unit. But when digging deeper, we now know we have to send a memo to all the teachers using this textbook, so that they have accurate information to use now – not just when the textbook needs to be reprinted. This requires speaking to the textbook publishers as well as the chief curriculum specialist for the Department of Basic Education Natural Sciences. Phew.
There is so much that needs to be done! But there are so many of us quietly working away in the background… If you’d like to join us, please sign up for Advocacy Training (it’s the simplest way to make sure we’re on the same page). And if you want to advertise in our fundraising calendar, please email firstname.lastname@example.org!
One step at a time… We’ll make a difference to diabetes advocacy. Now you can see why I haven’t done a report before – it’s an exhausting read, isn’t it?
What to read next?
Let’s talk about diabetes stigma: Is diabetes stigma real? Is it worse for people with Type 2 diabetes? What do we do about it, and how do we make it better?
Diabetes Advocacy training – you’re invited: SA Diabetes Advocacy has recently launched a 4 week Diabetes Advocacy Training course. It’s entirely online and totally free, and they want to empower as many diabetes advocates as they can.
Diabetes and kidney disease: Let’s take a look at diabetes and kidney disease. Kidney disease is a common long-term complication of uncontrolled diabetes, so knowing how to keep your kidneys healthy is important.