As a type 1 diabetic, first diagnosed days away from slipping into a hyperglycaemic coma, diabetes education is near Bridget McNulty's heart. Eyes ablaze and hands trailing the air, McNulty is impassioned. "And that gives me goosebumps," she says, "I mean, it is life-changing. It takes away the fear and it takes away the stigma."
The founder of South Africa's largest online diabetes community non-profit Sweet Life, McNulty is discussing the latest culmination of her ideas and research into solutions for people living with diabetes in South Africa and beyond. Next month, in the run up to World Diabetes Day on November 14, McNulty will pitch her "SA Diabetes Chat prototype" - a WhatsApp bot set to disseminate diabetes information through conversational prompts and video clips in five languages - before a panel at the Diabetes Center Berne in Switzerland. On the day, her prototype will be one of three global projects vying for a $100 000 (around R1.9 million) grant at the centre's Open Innovation Challenge, in the "Digital Diabetes" category.
Speaking to Spotlight at her Hout Bay home, McNulty says that diabetes is the number one cause of death for women in South Africa, and the second largest cause of death for men. According to a recent Stats SA report, diabetes-related deaths stood at just under 27 000 in 2018, having more than doubled from where it was in 1997. (There is some discrepancy between Stats SA's numbers based on death certificates and estimates from respected epidemiological modelers, but that diabetes is near the top of the list is not disputed.)
Characterised by sustained high blood sugar levels due to the pancreas not producing enough insulin, or body cells becoming unresponsive to the hormone, diabetes is mainly divided into type 1 and type 2. Type 1 is treated mainly with insulin injections and type 2 with one or more of several anti-diabetic medications.
McNulty relays how in 2020 South Africa's National Department of Health approached Sweet Life for help. "We did a deep dive into the available materials and research and discovered that the current diabetes education is disorganised, dense and difficult to understand," she says. "It's largely paper-based, largely English, even though only 8.2% of South Africans prefer English."
Solving a problem
She explains the problem they want to solve: diabetes education in the right format, in the right language, at the right health literacy level, to the right person, exactly when they need it. Their solution? SA Diabetes Chat.
McNulty adds that South Africa has 96% WhatsApp penetration, that the chat bot is cheap and easy to use, with no specially downloaded phone app required. Messages and recorded videos will be in English, Afrikaans, isiXhosa, isiZulu and Setswana. Importantly, it will replace conventional top-down public health communication - from healthcare worker to patient - with a peer-to-peer model as well as a strong story-telling component. For example, they have already recorded South African actress Gcina Mhlophe narrating educational stories related to diabetes, like this one called Dumile and his Grandfather.
Spotlight tested the WhatsApp chat bot (the number is 087 721 5714). This generated a greeting, illustrated with emojis: "Hi! We are Sweet Life, South Africa's largest diabetes online community. We are here to share information about your diabetes rights, and tips on how to manage diabetes. First Question! Do you know your diabetes rights?" A "no" response is followed by prompts for "public clinic" or "medical aid." The public clinic option leads to an information pamphlet, followed by a break-down of the "basic care bundle that you can access at your local clinic or hospital."
The bot elaborates: "All those on insulin have a right to needles - enough for daily injections, a needle should be used five times at most; a glucometer (a blood glucose meter) - every person using insulin (type 1 or type 2) should be given a free glucometer; and glucometer strips - 150 strips a month for those with type 1 and 50 strips for those with type 2."
McNulty says: "Instead of your nurse handing you a leaflet which you don't really understand, they show you a one-minute video on their phone. On it a person who looks like you and speaks your language and actually has diabetes, is teaching you how to inject insulin for the first time. You could take that video home and watch it 17 times on your own phone before you inject for the first time."
She notes SA Diabetes Chat's benefits will extend across sectors. "It's not just for people with diabetes but caregivers, healthcare workers, clinics, pharmacies, and the National Department of Health. And it's not just for South Africans. What we're building here is a framework easy to scale in other African countries." The Swiss grant would help them further expand the bot's content, she adds.
Fear and stigma
McNulty says fear and stigma make people with diabetes reluctant to find help. To this end, language around the condition is a problem, particularly around type 2, which is often described as a "lifestyle disease" associated with sedentary habits - a condescending and blameful attitude, she says, which dismisses the condition's strong hereditary aspect.
"Two people can eat exactly the same junk food, be the same weight, not exercise, live a sedentary lifestyle - and one will get diabetes because it's in their genes, and one won't," she says.
Sweet Life has compiled a call for a new language around diabetes, and an online stock library with stereotype-breaking photographs showing, for example, people with diabetes preparing meals of leafy vegetables.
In addition, McNulty contacted local publisher Maskew Miller Learning to point out "misleading and stigmatising" diabetes information in a Grade 6 Life Sciences textbook used at schools countrywide. A paragraph within the textbook elaborates on "overweight children" who do not play outside, "bad diets" and diabetes.
McNulty - herself married with two children - made changes to the textbook copy with the updated edition to be rolled out next year. "The timing was so good," she says. "MML [Maskew Miller Learning] said they were actually revising the whole textbook. And so they commissioned me to rewrite the paragraph."
McNulty adds that men are often fearful to acknowledge they have diabetes due to ignorance around impotence - which could be a complication if the condition is left untreated long term. "This is not a given at all," she says, "it only becomes one if you have ignored your condition for a long time. If you catch diabetes early enough, this is preventable."
Commenting on the type 2 diabetes medication semaglutide (brand name Ozempic) - which is causing "miracle weight loss" ripples in affluent countries around the world - McNulty points out a growing local scarcity as South African doctors increasingly prescribe the drug for weight loss, too.
"Ozempic for the right person with diabetes in the right dose, is transformative," she says. "The main response we have had from our community is frustration that they aren't able to get stock. I've had numerous people emailing me as a last resort, saying things like: I don't know where to go, I've called every pharmacy, and everyone is just saying there's no stock. I had someone this week saying it's the only drug that has ever worked for their diabetes control, and they can't find it anywhere." Spotlight previously unpacked the public health debate around access to semaglutide and obesity in South Africa here.
A close call
Inside McNulty's study, a vase of long stem flowers sits on a plywood desk. There's a basket with origami paper birds on the floor and a wood-blocked Desiderata print - "Go placidly amid the noise and the haste..." - on a wall.
McNulty's own journey with diabetes started when she was 25, soon after she moved from her hometown of Durban to Cape Town to start her first job as a magazine features writer, having recently completed her debut novel.
"I had all the classic symptoms. I was literally textbook," she says. "I was desperately thirsty. I lost a huge amount of weight, 10 kilos, maybe 15. I was super thin, constantly hungry, desperately tired. Blurry vision and brain fog that just didn't make sense."
Far from home, McNulty found a new doctor who listened to her symptoms, suggesting she might have HIV. "I said to him that it wasn't likely, asking him if my symptoms were not signs of diabetes as I'd been reading about it on Health24. And so he did a test. And my blood sugar was 25 [millimoles per litre or mmol/L] - I should have gone straight to the hospital!"
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But she says the doctor offered scant advice. That evening - ravenous - she had a Steers burger and chips and sugar-free Sprite for dinner. "This would've pushed me into 35 to 40 [mmol/L]. I was so close to a coma," she says. "The next day, I went to a MediClinic and they put me on a drip..."
The World Health Organization considers blood glucose levels of 7 mmol/L and over as diabetic, with hyperglycaemia setting in at 15mmol/L.
After being diagnosed with type 1 diabetes, McNulty was desperate for information. "They sent me home with a stack of pamphlets and I read everything. And everything I read said: Now you're at greater risk of blindness, amputation, heart disease, kidney failure, and more. Nowhere did it say: or, you could live a perfectly normal, healthy, happy life if you look after yourself," she says.
"When you're just diagnosed, you are so terrified, and it feels like the end of your life. Like, I could not imagine having to inject myself every time I ate and having to test my blood sugar all the time. It was just so confusing and overwhelming."
Educate and inspire
Having felt adrift on a sea of fear-inducing messages and misinformation following her own diagnosis, McNulty founded Sweet Life first as a quarterly magazine to educate and inspire people with diabetes in 2011. It changed to an online community in 2017.
She says her own condition stems from "a genetic possibility and then a combination of two or more immunological insults". She explains: "So it was probably a virus and then another virus, and the combination of those two viruses triggered the genetic possibility."
On her arm she wears a round disc, a FreeStyle Libre flash glucose monitoring system. Replaced every two weeks, the device provides blood sugar readings on an interface on her phone. Not everyone can afford this technology - "you have to fight your medical aid for them," she says.
McNulty leads a full and busy life, her advocacy work continuing for people living with diabetes across the private and public sectors.
"There is so much that needs to be done," she says. "But there are many of us, quietly working away in the background..."
