Jane Makhubu wakes up from a restless sleep. Her husband Jerry complained about not feeling well the night before and she is worried.
On an ordinary day she would only check on him after she had taken a bath, but on this autumn morning she woke him as soon as she got up.
“I could see immediately that something was wrong,” she explains. “I tested his blood sugar level and it was very low, so I gave him some tea.”
Jerry was diagnosed with type 2 diabetes in 2008.
Type 2 diabetes is a chronic condition in which the body cannot effectively use the hormone, insulin, to regulate blood sugar, or glucose. In type 1 diabetes, a person’s body does not produce this hormone at all and they depend on multiple daily insulin injections to stay alive.
Uncontrolled diabetes can lead to conditions such as heart attacks, strokes, kidney failure, amputations and blindness, according to the 2016 Global Report on Diabetes by the World Health Organisation.
The WHO says nearly 8% of men and 12% of women in South Africa have diabetes. The condition now accounts for about 6% of deaths and is the second leading cause of natural deaths, Statistics South Africa’s most recent mortality report has found.
Since Jerry was diagnosed it has become routine for Makhubu to check his blood glucose level first thing in the morning before she gives him tea.
Makhubu uses a small, hand-held machine – a glucometer – to measure whether Jerry’s blood sugar levels are too high or low. Each time, Jerry has to prick his finger to collect a drop of blood to put on to a small testing strip, which is inserted into the machine and then read by it.
Makhubu tests her husband’s blood about five times a day. She uses three boxes of testing strips a month. This costs them about R600, or R200 a box – almost half their monthly income.
But if Jerry’s blood sugar soars or drops to very low levels, he could lose consciousness or fall into a coma.
The thought of this preys on Makhubu.
After giving Jerry his morning tea, Makhubu waits for two hours before testing his blood sugar again. On this Tuesday morning Jerry’s condition was quickly deteriorating – his blood sugar was lower than it was before he had his tea. Their daughter called an ambulance and soon paramedics were rushing into the couple’s home east of Johannesburg. Paramedics established that Jerry was hypoglycaemic, or had very low blood sugar levels, and rushed him to the nearby Pholosong Hospital.
“I have no peace,” she pauses. “Sometimes when my husband is asleep I wake him up just to make sure that he is still alive.”
Self-management is essential
Regular blood glucose testing is “a cornerstone of diabetes care” that can help people with diabetes control their condition, according to a 2013 study in the Journal of Diabetes & Metabolic Disorders.
Michael Brown, a nurse who specialises in diabetes and a clinical consultant at the Centre for Diabetes and Endocrinology in Johannesburg, says that access to blood testing strips is crucial for people with diabetes.
“It can provide an immediate ‘snapshot’ of the current blood glucose level and, over a number of readings, the trends and variability of blood glucose values. This can help to avoid, detect or manage potentially health damaging or life-threatening situations,” he explains.
Brown says the frequency at which the blood glucose levels of people with diabetes needs to be tested differs. “There is no average. It can range from two to four times a week or four to six times a day.”
Government guidelines stipulate that insulin-dependent diabetics should be given enough testing strips to meet their needs. But in practice, most state patients qualify for just one free box of 50 strips each month – too few to test twice on most days.
According to information provided to Bheksisa by the national health department, Gauteng, KwaZulu-Natal and the Northern Cape don’t provide more than one box a month to each patient. The Free State health department also confirmed this was the case but added that it depended on availability. No other province responded to requests for comment.
Jerry doesn’t receive any strips from the government, as only patients who are dependent on insulin qualify for free strips. He doesn’t use insulin, but takes pills to manage his diabetes.
The couple’s only source of income is Jerry’s state pension of R1 500 a month. Without the help of their older children, Jerry and his wife would have to choose between buying essential daily items or the strips, just so Jerry can manage his diabetes to stay alive.
Do the benefits outweigh the cost?
Because testing strips are expensive and the benefits of their use for type 2 diabetics are poorly understood, many countries limit daily blood sugar testing for type 2 diabetics, a 2016 study published in the journal Acta Diabetologica has found. The United Kingdom is among these countries but moved in 2015 to recommend short-term access to blood testing strips to allow patients to confirm episodes of hypoglycaemia (low blood sugar), which can lead to comas.
Makhubu bought a blood sugar testing machine (a glucometer) soon after her husband’s diagnosis and has been buying the strips from a pharmacy ever since. But she struggles to keep up with the cost.
She left her job in 2008 to take care of her husband. They now depend on Jerry’s pension and support from their daughter. Makhubu will only qualify for a state pension after she turns 60 later this month.
A 2010 study published in the Canadian Medical Association Journal found that the cost of frequent blood sugar testing was unlikely to outweigh the benefits unless blood testing strips became cheaper. But authors argue that testing up to twice a week could be cost-effective in people with type 2 diabetes – even at current price levels.
Brown says monitoring can detect gradual upward trends in blood glucose that will alert healthcare workers to review and possibly adapt a person’s treatment.
“It can also provide invaluable feedback on the effects of exercise, food, stress and medications on blood glucose levels which can be used to adjust behaviours and, together with the diabetes team, the therapies for diabetes,” he explains.
Testing strips are often the most expensive part of day-to-day diabetes management, says Joao Fernandes, a researcher at the International Diabetes Federation.
He says ongoing research by the federation shows that, in countries where patients may have to pay out-of-pocket for testing strips, the money spent on the diagnostics can account for 15%-20% of a person’s disposable income. In Jerry’s case the scenario is far worse: if his daughter wasn’t helping him with buying the test strips, it would amount to 40% of his income.
Although there is no scientific data available that tells us what percentage of the world’s diabetics have access to glucometers and testing strips, anecdotal evidence from the WHO suggests that most insulin-dependent diabetics don’t have the luxury of using them – largely because of cost.
Is government getting the best price?
According to national health spokesperson Popo Maja, KwaZulu-Natal, Free State and Northern Cape procure testing strips from the pharmaceutical company Roche for about one-third of the retail price or about R71 a box.
Only Gauteng pays more than this – R82 a box of Acon Labs On Call Plus or One Touch Select strips.
But provinces may not always be getting the best price.
The health departments of KwaZulu-Natal and Northern Cape do not follow a tendering process to procure testing strips. The Northern Cape’s tender has expired. But the province continues to procure the strips from the same supplier for R492 721 a year for about 7 000 boxes.
Neither the Gauteng nor KwaZulu-Natal departments responded to Bhekisisa’s questions about how they were purchasing the diagnostics.
Generally, a centralised or national tender would be cheaper as bulk discounts might apply, says Krige Siebrits, a senior public economics lecturer at Stellenbosch University. But he cautioned that if provinces were purchasing different types of glucometers more localised procurement could make better sense.
He explains: “In South Africa, it is probably fair to say that procurement at provincial and local levels tends to be problematic. In many cases capacity is lacking. This is a strong argument for a centralised procurement process in most areas of the country.”
Another near miss
Back at home, later that day, Makhubu and Jerry have returned from the hospital. This time the paramedics reached him in time and Jerry did not have to be admitted.
Makhubu puts the carry bag back on her dressing table. It contains a pair of pyjamas and toiletries.
“I have a bag ready so that when we have to rush to the hospital we don’t waste time,” she exhales. “It’s always ready, even his [clinic] cards [are in it]. I keep everything together.”
She also keeps a pouch with all of his medication next to the bag – just in case.