Diabetics’ daily struggle with financial, emotional burden

A group of children play by the track, and scatter when the train approaches. We wait until it snakes away then cross to the other side of the shanty town.

Several narrow paths between single-room mud huts and tin shacks crammed closely together lead us to one of the houses in Kibera where we meet 14-year-old Swaleh Ashraf.

“I have what is known as type 1, or insulin-dependent diabetes, which usually begins in childhood, and I must take daily insulin injections just to stay alive,” Swaleh explains as he raises his T-Shirt to expose his swollen tummy.

“I do not know where to inject any more,” he says. “You see, my stomach and thighs are so swollen already and very painful.”

Behind him, a sniffle turns into a sob. It is Swaleh’s 12-year-old sister Kulthum who refuses to talk to us. “I was diagnosed with diabetic type 1 five years ago, but hers was detected last year. She has always been in denial and does not want anyone to know her condition,” says Swaleh.

Swaleh and Kulthum are just two of the four per cent of Kenyans whose diagnosis has set them on a lifelong path of medical treatment and according to the World Health Organisation, this percentage could double over the next 30 years in most developing countries.

Once seen as a disease of the affluent in society, diabetes has become a growing problem in developing countries. Of the estimated 1.5 million global diabetes deaths in 2012, more than 80 per cent occurred in low- and middle-income countries, according to WHO data.

LEADING NON-COMMUNICABLE DISEASE

The Health ministry says diabetes remains one of the leading non-communicable diseases that account for 40 per cent of deaths in Kenya annually.

There are two major forms of diabetes. Type 1 diabetes is characterised by a lack of insulin production; the cause is unknown and it cannot be prevented. Insulin is a hormone that helps glucose get from the blood into the cells where it is converted into energy.

Type 2 diabetes is far more common, accounting for about 90 per cent of all diabetics worldwide. Often preventable, it results from the body’s ineffective use of insulin. In sufferers, the pancreas makes little or no insulin or the cells cannot utilise the insulin effectively.

Glucose, therefore, cannot get into the cells and builds up in the blood.

If blood glucose stays too high, it can damage organs such as the heart, eyes, kidneys and nerves over time. This damage leads to life-threatening health complications.

Both types are aggravated by poor lifestyle choices; traditionally, where people depend more on processed foods. Physical activity is also declining as more people depend on motorised transport. And, as buildings replace playgrounds, children are left with few places to engage in sports.

The biggest challenge, however, for most families is ongoing costs of managing the condition, which poses a serious financial burden.

For Swaleh, Kulthum and their parents, the journey after the two were diagnosed with diabetes has been quite treacherous, especially since both parents do not have a steady source of income. “They have to be on insulin constantly, and they have to measure their blood sugar every time,” says their mother, Ms Zainabu Mohammed.

It is estimated that proper management of diabetes in Kenya would cost about Sh12,000 a month. Not many in the country can afford that. The government and other partners like Novo Nordisk have come together to subsidise the price of insulin and also provide training on diabetes care to health professionals.

“On the lower side, one needs at least Sh4,000 for medication in the management of a type 1 diabetic. This cost may vary for type 2 diabetics who use tablets alone or together with insulin injections,” says Mr Eric Omondi from the Kenya Diabetes Management and Information Centre.

Apart from medication, it is very important that diabetics have three meals and three snacks a day and these, have to be whole meals and complex carbohydrates. This, for many people in Kenya, is a luxury they cannot afford.

GIVE NORMAL FOODS

“I cannot just feed them anything, so I give them the normal foods but watch out on the portions. I cannot afford an apple for each of them even twice a week, let alone brown rice and brown bread. They have to do with kachumbari as a fruit,” says Ms Mohammed.

According to Mr Omondi, many patients die prematurely, not only because of late diagnosis, but also because of poverty as most cannot afford the treatment and diet costs.

“We have very many people who use one needle for even two or three days and cannot stick to the one needle, one use rule because of costs,” he says.
Other than the financial constraints, Mr Omondi says the emotional and psychological burden is also a challenge for the patients.

“People take long to accept and adhere to therapeutic needs. They present themselves late and still postpone start of medication because they are in denial and that is when complications that damage the heart, blood vessels, eyes, kidneys and nerves, cause chronic problems and early death occurs,” he says.

Ms Mohammed says she has to constantly monitor her son and daughter to ensure they inject insulin.

“Kulthum has not yet accepted that she is a diabetic and that worries me. She cries a lot and is not happy when I tell people that she is a diabetic,” says Ms Mohammed.

“While other children wake up to brush teeth and take a bath as their first task, mine go straight to injections. I have to live with the fear that something could go disastrously wrong and I could try to wake them up and discover they are comatose, or worse. It is tough.”

These are some of the realities that many countries face, even as World Diabetes Day is marked annually, to serve as a reminder to governments of their commitment to develop national policies for diabetes prevention, treatment and care — a pledge they made during the 2011 UN High Level Meeting on Non-Communicable Diseases.