Tough economy adds despair for epilepsy patients

For the past few months the coronavirus pandemic has wreaked economic and social havoc on Kenyans. However, for Lillian Wangui, it is an infliction that threatens her young life.

The 26-year-old from Githurai 45, Nairobi County, is epileptic and has been leading a normal life, working hard, like everyone else to make ends meet. Then Covid-19 struck and cut her income sources.

“Before Covid-19, I used to sell second-hand clothes, as well as supplement my income by doing peoples laundry within the estate. I also doubled as a dreadlocks stylist and was anticipating to kick start my dressmaking business after completing my training.”

“I have just completed my training in clothe making and design at a local vocational centre. Apart from that, I am a praise and worship team member as well as one of the dancers in a gospel crew at our church,” she says.

But for months now, she hasn’t been able to work. This has made it difficult for her to even get the little money needed to buy the medication she needs to manage her condition, as well as food.

“Nowadays I have to content with only one meal a day when I’m lucky. I also use four tablets of phenytoin daily, which translates to at least Sh400 a month for the medication, money I cannot afford at the moment,” she says.

Most common epilepsy medicines are usually taken once or twice each day. In some cases they are taken 3 times a day. Medical experts recommend that epilepsy medicines are taken regularly, as prescribed because missing a dose can increase the risk of having a seizure.

Besides the food and medication, she also cannot afford frequent visits to her neurologist which can cost as much as Sh1,500.

As the health crisis drags on, her worst fear of going back to her horrible past, has been turning into reality as the frequency of seizures increases with each passing day.

Growing up, she recalls, how her mother was at a loss on how to manage the condition her daughter was born with and watched helplessly as the attacks increased.

On two occasions she was hit by a car while experiencing epileptic seizures as she crossed the road.

"A friend of my mother advised her to take me to the hospital, and so in 2002, I started taking my medication."

Due to the frequent fits she experienced, while in high school, she had to be transferred from a boarding to a day school.

But eventually in 2014 she completed her high school studies, and afterwards enrolled in different vocational trainings and worked to earn a living, thanks to her discipline when it came to neurologist visits, as well as strict adherence to her medication, that saw the number of seizures reduce immensely.

But the pandemic is threatening to undo all that progress.

According to the National Epilepsy Coordination Committee (NECC), two in every 100 Kenyans have epilepsy, with the prevalence being higher in rural regions compared to urban areas.

"This is because the risk factors for getting epilepsy are higher in the rural regions than in urban areas. For example, the risk of untreated brain infections is not only high in these regions, but healthcare centres do not also have the capacity to handle such situations," says Fredrick Beuchi, NECC national secretary.

Dr Eddie Chengo, an epileptologist and vice chairman of NCEC notes that though it is important for epilepsy diagnosis be right, one of the most effective ways to control this condition is to prevent the triggers.

"Apart from that, the medication has to be right for the right seizure type. Once that is done then now the ball is the patient's court. Patients and or parents have to take charge. This means they have to ensure that they avoid anything that could trigger seizures and the commonest is missed or skipped medication, stress and missed meals," he says.

Psychosocial support

The treatment of epilepsy encompasses drug intake and psychosocial support.

"Some epilepsy medication are very expensive and even cost up to Sh100 per tablet. However, most of the epilepsies are treated with inexpensive medication which cost about Sh500 per month," explains Dr Chengo.

The aim of treatment, he adds, is to give the patient freedom from seizures with no side effects, or at least minimal side effects.

But addressing psychosocial issues which come with epilepsy is also equally important, and thus the need to be examined by a neurologist.

Dr Chengo stresses on the importance of the visits to a neurologist noting that, "Sometimes the doctor can pick up issues that the patient may not complain of during routine physical examination."

Other reviews can be done twice a year, but it is advisable to be examined by a neurologist at least three to four times in a year.

"The cost can range from no payment at all, or from Sh1,500 or more per visit depending on where you are seeing your doctor," says Dr Chengo.

But this is a tall order for epileptics, especially considering that most, according to NECC studies, come from poor socio-economic backgrounds.

And even for those who can afford the consultation fees, there is still the hurdle of shortage of neurologists. Kenyan has 20 neurologists.

To bridge the healthcare gap, neurologist in Kenya have been developing curriculum for training clinicians on epilepsy care.

"Epilepsy care in Kenya is taking shape, though in a slow pace. Out of the 20 neurologist, more than 200 clinicians have been well trained in diagnosis and management of epilepsy," Benuchi says.

However, still a lot needs to be done as the ratio of neurologist to patients is low.

"There is one neurologist for every 50,000 patients. There are also a few centres in Kenya that offer this kind of treatment, and most of the clinics only provide drug treatment and only address other issues when they arise,"says Dr Chengo.

According to Benuchi, though most government hospitals have subsidised medication, costing patients only Sh100 per month, individual health care clinics face different challenges during these pandemic times.

"Some people are unable to even carter for transport cost to get their medicine. This has resulted into seizure relapse and or frequency."

He warns that during these hard times, seizure frequency is likely to increase in patients who were otherwise stable. "This may be as result of missed medication because they can no longer afford to buy. Some may reduce the dose because they can't take the medicine without food," he says.

Difficult times

He foresees difficult times for people living with epilepsy if something is not done urgently to address their plight, bearing in mind that there is a correlation between non-adherence to medication and premature death.

A 2014 American Academy of Neurology study showed that people with epilepsy are six times more likely to die compared to the general population due to non-adherence to medication.

Dr Chengo says most of the causes of epilepsy seizures can easily be prevented by following simple and inexpensive public health measures, insisting that people living with epilepsy require support.

He stresses on the importance of ensuring that family members understand the condition well by providing information and counselling that is tailored for their situation.

"All family members should ensure that medicine is taken on time. They should also positively talk about epilepsy and discuss risky behaviours that could cause injuries to the patients and others. Apart from that, they should deliberately plan for clinics and ask as many questions to the doctor as possible- there is no stupid question, as well as plan ahead of time on education, work and lifestyle issues."

Other than that, Dr, Chengo insists, with the right medication and care, epileptics like Lillian can live a normal and fulfilling life.