Health Insurance: What mothers of children with sickle cell disease need to know

Mrs Idayat Akinwale is best described as a strong tower of refuge for Ruka, a 30-year-old mother of one living with sickle cell disease.

“We found that she had sickle cell disease at age one. Ruka was always sick, which affected her schooling. She failed her West African School Certificate examination. She resorted to hawing minerals rather than retaking the examination,” Mrs Akinwale retorted.

However, Ruka, now 35 years old, had been married twice but, due to battering from her husbands, now lives with her 60-year-old mother, who has been fending for her since she was a baby and her father died.

Mrs Moromoke Adenuga’s experience with sickle cell disease is slightly different. Her 32-year-old son, Biodun, was discovered to have sickle cell disease at three years old. Her first child, also with sickle cell disease, died at age 18 after a lot of money had been spent on her health.

Biodun has always been sick during the examination period, and on admission at the hospital, he left school after finishing senior secondary class two. Over the years, out-of-pocket spending on his health and his late sibling left Mrs Adenuga in penury.

These women were among the “Mothers of Warriors in Action (Mowa)” celebrated by the Sickle Cell Hope Alive Foundation as part of their activities to mark World Sickle Cell Awareness Month.

The founder of the Sickle Cell Hope Alive Foundation (SCHAF), Professor Adeyinka Falusi, stated that about six million Nigerians have sickle cell disease, with another 45 million being carriers of the traits of the disease that come with a lot of pain, leg ulcers, anaemia, damage to organs, loss of working hours, and other challenges.

“150,000 children are born annually in Nigeria with sickle cell disease, while many die because they are at increased risk of infections, strokes, painful erections, bone pains, and jaundice,” she added.

However, access to quality healthcare and information would have altered this pitiable state of events in Nigeria, where many children with sickle cell disease die before their 5th birthday as a result of complications arising from SCD.

Sickle cell disease, like other chronic illnesses, requires routine medical follow-up, occasional acute care, and hospitalisations. Still, many people with sickle cell disease (SCD) are not getting the care that they need. Many lack health insurance coverage.

Many studies have corroborated the poor awareness of the benefits of health insurance for the care of children with sickle disease.

The researchers at the Lagos University Teaching Hospital in the Pan African Medical Journal also reported that health expenditures for children with sickle cell disease are largely out-of-pocket. Despite a high rate of awareness, enrolment and utilisation of health insurance are low.

Executive Secretary, Oyo State Health Insurance Agency, Dr Olusola Akande, speaking at the opening of a two-day media dialogue with the theme, ‘Changing the narrative on child mortality through health insurance,’ in Ibadan, described health insurance as a win-win for children, particularly those with diseases like sickle cell disease.

“Even the basic package takes care of at least four to five things: payment for a hospital card, consultation with the doctor or an expert, basic tests, some medicines, and even the cost of bed admission when such a child needs to be admitted. Anyhow, out-of pocket spending each time they go to the hospital is reduced.”

Dr Akande said the Oyo State Health Insurance Agency also enrols children with pre-existing conditions like sickle cell disease, HIV, and disability to support their care and reduce out-of pocket spending on health.

According to him, the health benefits of each package are the same for everyone, regardless of such a condition as sickle cell disease.

“What we are aiming at is to get as many people as possible on health insurance, leaving no one behind, including the poor, the rich, and the rural and urban dwellers,” he added.

Dr Tomiwa Akintunde, a principal medical officer at the University of Ilorin Health Services clinic and also involved with the Bethesda Sickle Cell Foundation (BSCF), said ensuring all children, in particular those with chronic illnesses, have a health insurance policy is the way to go in Nigeria.

“Of course, people always think their child will not fall ill, and so the money is wasted. But what they will be safe from in case the child is sick will be more than they think, especially with chronic illnesses, that the child needs frequent medical care,” he declared.

The cost of care is high among households of children with sickle cell disease; seeking care varies according to disease severity, significantly increases with increased duration of hospitalisation, and is so irrespective of socioeconomic status.

Also, Dr Olayinka Kotila, a senior lecturer at the University of Ibadan, quoted a study in 2023 that said a person with sickle cell disease spends nothing less than N76,000 per month on care, aside from the financial burden of hospitalisation, loss of work days for caregivers, and absenteeism from school.

Dr. Oladapo Aworanti, a consultant haematologist and acting zonal director of the National Blood Service Commission, South-West Zonal Centre, said ensuring children with chronic diseases like sickle cell disease have health insurance coverage is important to deter default from treatment and improve their wellbeing.

“They will be able to present early in the hospital with the complications of the disease. Whatever the doctor says, they will do, thus reducing complications from the disease. Ensuring they all have health insurance is good for us, the doctors.”

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