Cape Town - A petition to reduce the cost of Continuous Glucose Monitoring (CGM) devices has accumulated more than 13 500 signatures, as parents of children who are diagnosed with Type 1 diabetes feel that the device is unaffordable and inaccessible to low-income families.
The CGM device is used to provide diabetic patients with blood sugar readings, inform patients on how to balance their meals and insulin requirements, and alert patients to potential complications before diabetic emergencies take place.
Petitioners believe that the cost of the device is too pricey for the average South African household, and access to the device should be made a priority.
With families concerned about their loved ones, Amanda Connors said that she does not know how many times she would have had to return to the hospital after her son’s diagnosis if she did not make a plan to get the CGM device, despite the challenges.
“We were doing extra finger-prick tests, messaging the clinic nursing sister daily, and generally, in a panic through most of the first few weeks. But we were lucky enough to learn about CGM devices very soon after our son was diagnosed, and it completely changed everything.
“Despite this, the cost of the device to the public is extremely expensive and much higher than their manufacturing cost. CGM devices are often not covered by medical aid, and they are not a funded option available from public health-care facilities. Some private practices are able to sponsor a patient with a single device received from a manufacturer, but the average cost to buy a CGM device privately is anywhere from R2 000 to R4 000 a month. I don’t know many families that can afford that.
“Diabetes is a life-threatening illness – it’s one of the fastest-growing chronic diseases that Africa faces, and there are no long-term warning signs or changes you can make as a parent to prevent your child becoming Type 1 diabetic. When a child is diagnosed with Type 1 diabetes, the caregivers in the family have to learn how to track sugar levels, choose 'safe' foods, balance insulin dosage & monitor the child constantly.
“Without a CGM device, the family lives in fear of high and low sugar emergencies, and the child is at risk of emergency hospital admission because too much insulin can lead to a coma, and on the other side, a lack of insulin can be fatal,” said Connors.
Chairperson of SA Diabetes Advocacy, Bridget McNulty, said that she believes the challenge arises from a lack of vision when it comes to the accessibility and affordability of the CGM device.
“I think the challenge is ultimately one of lack of vision. We are asking for an investment today that will prevent future long-term complications (amputation, blindness, kidney failure, and heart disease are all common long-term complications of poorly controlled diabetes). But because Type 1 diabetes isn’t infectious, it's not seen as an immediate threat.”
“The lived experiences of people with Type 1 diabetes are often fraught with fear. Access to these devices could change that. But it’s not seen as a priority. Because Type 1 diabetes only accounts for 10% of people with diabetes, it is often not given the attention it deserves. As a result, more and more children and adults with Type 1 diabetes end up in hospital unnecessarily because they aren’t empowered to self-manage their condition with the correct tools.”
“South Africa is also very behind when it comes to diabetes innovations. In the olden days, urine testing was used as a means to test glucose. Then we graduated to blood glucose testing, and now sensor technology is available - yet we're still stuck in the past. Cost is obviously a factor, but just waiting around for the cost to drop won't solve the problem.”
“Hence, SA Diabetes Advocacy will lodge a legal appeal with the Council for Medical Schemes to make sensor technology a PMB for people with Type 1 diabetes. We believe that if all medical aids are required to offer sensors as part of their Type 1 basket of care, this will drop the price sufficiently for state care to offer it to their Type 1s - particularly children. It's not a matter of if, but when - when will we move into the future and give people with Type 1 diabetes the best chance at a healthy life,” said McNulty.
Council for Medical Schemes (CMS) acting general manager for Stakeholder Relations, Mmatsie Mpshane, said the CMS’s current position is that the device is not PMB level of care, owing to a lack of cost-effectiveness, affordability studies, and proven improved outcomes specific to the South African healthcare environment.
“Despite this, the CMS has ruled that it does, as PMB level of care in several instances, that applications for its funding be considered on a case-by-case basis upon motivation by the treating healthcare provider.”
“For example, in children that required continuous non-invasive monitoring of blood glucose with frequent episodes of hypoglycaemia owing to demonstrable difficult glycaemic control.”
“To deem it a blanket PMB level of care for all Type 1 diabetic members and beneficiaries in the absence of the above conditions would be premature,” said Mpshane.
Weekend Argus