I am a reluctant advocate. I don’t like arguing, or shouting, or picketing. I dislike crowds and can almost always see the other side of a debate. As such, I held back when it became obvious that South Africa needed a diabetes advocacy organisation. I had already founded Sweet Life, South Africa’s largest online diabetes community, and the Diabetes Alliance, an alliance of all the organisations, associations and companies working with diabetes in SA. I felt my work was done.

Except, I’m also impatient, and nobody else was doing it.

So after a year, SA Diabetes Advocacy was born – a non-profit umbrella organisation of all the diabetes advocacy groups in SA: Diabetes SA, Sweet Life, Bete It, Youth With Diabetes, Kids Powered by Insulin, and YT1. We started with what seemed a modest goal: get medical aids to listen to their members with type 1 diabetes, and fund sensor technology to test blood glucose.

It seemed a modest goal because it was focused on medical aids, who are obligated to listen to their members, and type 1s, who make up 10% of people with diabetes. Worldwide, sensor technology is funded first for those with type 1 diabetes, then for those with type 2. How long could it possibly take to achieve? How long indeed.

Three years later, we’re still taking two steps forward, one step back.

An auspicious beginning

We started with a bang. I didn’t really believe in the power of the patient voice until we set up our first petition – Empower diabetics to control their blood sugar: cover FreeStyle Libre on SA medical aids. With more than  3,000 signatures in a matter of days, we knew we’d hit a nerve within the diabetes community, and immediately reached out to medical aids to talk to us about it.

Sensor technology is extraordinary. Instead of having to prick your finger at least five times a day and squeeze out a drop of blood for one single blood glucose reading in this moment right now, it lets you see your blood glucose 24 hours a day: either by scanning the device (flash glucose monitoring, FGM) or sending it to your phone (continuous glucose monitoring, CGM).

It gives your doctor remote access to your readings, so you can get emergency advice if necessary. And it also shows trends – if your blood glucose is going up or down – which lets you make better decisions. It’s comparable to driving with headlights on rather than by looking in the rear-view mirror in the dark.

Although medical aids knew about the advantages of FGM and CGM for their members, they were delaying making any decisions about whether to pay for these devices. The petition helped us create pressure so that the medical aids could make a decision. We focused on the FreeStyle Libre FGM because it is by far the most affordable on the market – roughly half the price of the more sophisticated CGM devices, and offering much of the same functionality.

Discovery Health was immediately responsive to our request for a meeting. In the next few weeks, we rolled out an extensive #FingerStickFree campaign on social media, a compelling video asking why medical aids don’t care about their members, and a flood of social media graphics where individuals asked for the device and tagged their medical aid.

After a series of meetings in which we both explained our sides of the story, reintroduced them to the manufacturers of the device for negotiation, met with an expert panel of diabetes specialists to discuss their proposal, and finally came to an agreement, South Africa’s first CGM Benefit was created. The news came on 14 November 2019, World Diabetes Day. What a win! Surely all the other medical aids would fall in line now. Surely.

A dull middle

Well, no. We reached out to all of them, pointing out that if Discovery can do it (with their greater numbers of type 1s) then other medical aids could follow suit. We created a #ThanksDiscovery campaign to hero Discovery and shame other medical aids.

And? Cricket noises.

Because I’m a Discovery member, and so is the secretary of SA Diabetes Advocacy, the other medical aids refused to meet with us. Undeterred, we empowered other diabetes advocates to approach their medical aids for meetings to discuss a CGM Benefit. Repeatedly.

While most principal officers were savvy enough to respond enthusiastically to an email, the requested meetings never materialised. When Covid hit, they had a legitimate excuse for distraction, as everyone was scrambling to figure out how to cope. One principal officer was blunt enough to say that it wasn’t a top priority, and to ask the advocates to please stop bothering him.

Fair enough. Except, when will it be a top priority? This is a major health issue affecting the lives of millions of South Africans every day.

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An extended – heartbreaking – middle

Our next attempt was to make it impossible for medical aids to ignore us by getting all type 1 members to email them on the same day at the same time. An email bombardment! Surely that would get attention?

No. No response. They truly did not care about members living with type 1 diabetes.

And so we decided to take it to a lawyer. If the medical aids themselves wouldn’t listen, could we appeal to the Council for Medical Schemes (CMS) to make it a Prescribed Minimum Benefit (PMB)? The lawyer believed we could, if we filed a Section 47 complaint citing that sensor technology “prevents future harm”. Seeing as long-term complications are the greatest risk of sustained high blood glucose, this was an easy argument to make. Blindness, amputation, heart disease, kidney failure – all expensive, future complications that can be avoided by better blood glucose control in the present.

The first step? Another petition: Make sensor technology a PMB for all Type 1s in South Africa. The goal was to win in private care so that the increased volume would drive down prices and make it more accessible in public care. We got more than 14,000 signatures – one of the top signed petitions on change.org. People spontaneously commented on the petition with stories of how these devices are truly life-changing for people with type 1: kids, pregnant women, those who can no longer feel low blood glucose (hypo unaware) and those who had lived in fear before the 24-hour visibility of being able to see blood glucose in real time.

We gathered 47 pages of testimonials from our community. Heartbreaking testimonials. Stories of how type 1s who live alone are terrified of their blood glucose going low overnight in case they don’t wake up. Those who have had car crashes from sudden, unexpected lows while driving. Children being woken in the night to have their fingers pricked, instead of letting them sleep as their blood glucose data is wirelessly transferred. Parents who can never get a full night’s sleep. Fingertips so damaged by years of fingersticking that turning a page is agony.

How could anyone possibly read these testimonials, along with clinical evidence and feedback from South Africa’s top diabetes specialists, and reject this claim?

It was rejected. The CMS claimed it was inadmissible as a Section 47 complaint. Armed with feedback from our lawyer, we respectfully stated our disagreement with the assessment of the inadmissibility of the complaint in its current format. That was in July. We’re still waiting for feedback from their Clinical Unit.

No end in sight

The medical aids won’t speak to us. The Council for Medical Schemes is ghosting us. We have asked our community for support, and they have poured out their hearts and souls – but it seems nobody cares.

The trouble, of course, is that we’re talking about quality of life here. And quality of life is not a measurable line on a spreadsheet.

We are often told to look to HIV advocacy for inspiration. They did an extraordinary job! They didn’t take “no” for an answer! But the conditions are vastly different. HIV was contagious and lethal and could be fixed by the right medication – which wasn’t being provided.

Diabetes shouldn’t be lethal, but it is, in this country (Stats SA reports that it is still the number-one killer of women in SA, and the second leading cause of death in men). It kills more people than TB, HIV and malaria combined. And yet it’s a slow car crash – with long-term complications showing up many years down the line.

What we’re asking for improves people’s daily lives, right now. Medical aids choosing to prioritise type 1 diabetes could literally change lives, right now.

And I get it! I understand that they have many conditions to care about, and that they have to balance their members’ needs. It’s a cost exercise at the end of the day, and we need to be creative about how we risk-share or trial it or equate cost savings like reduction in hospitalisation as a result of this sensor technology.

These are all conversations we could have. If only they would talk to us. We could be a bridge between the medical aids and the manufacturers – a reminder of the lived experience so that they understand why it’s so important, a negotiator and mediator when the conversations get intense.

If this is advocacy – discussion, collaboration, finding a path where there doesn’t seem to be one – then maybe I’m not such a reluctant advocate after all.

And if any medical aids are reading this, please send me an email! Let’s chat. DM