Katsina State Offers Lifeline to Sickle Cell Patients, But Advocates Call for Further Support
Mahdi Garba (Lead writer)
Whenever 30-year-old Sadiya Abdullahi, falls ill, her family faces a difficult struggle. The problem they face extends beyond worrying about the health of their daughter, to include the financial cost implications of paying her medical bills.
“Whenever I was hospitalised, my poor family spent at least 30,000 to 50,000 [Naira],” Sadiya said, recalled, reflecting on her ordeal with Sickle Cell Disease (SCD) before she became an enrolee and beneficiary of Katsina State Government’s health insurance scheme. “Now, if I go to the hospital, I get drips for free; I get medicine for free and I get the treatment for free.”
SCD is a genetic disorder that causes red blood cells to become rigid and sickle-shaped, leading to blocked blood flow, pain, organ damage, and anaemia. The condition is typically inherited when both parents carry the sickle cell trait or have the AS genotype.
At least 2% of Nigeria’s population struggles with the burden of SCD. Every year, there are about 150,000 newborns that are born with SCD and 50 million people carrying the sickle cell trait. According to research, nearly half of affected children die before their fifth birthday.
SCD affects not only the physical health of individuals but also disrupts many other aspects of patients’ lives. The disease can interfere with educational attainment, where symptoms such as fatigue and pain can lead to frequent school absences. This disruption can limit academic performance. In addition, the stigma and discrimination associated with SCD can create challenges and can make it harder for patients to find employment.
Tiny efforts, big results
Witnessing the challenges and struggles faced by families caring for children with SCD, Ahmad Muhammad Umar, Layla Ahmad Rufai, Yusra Nurudeen, and the late Hamza Nurudeen came together in 2018 to form a community known as Sickle Cell Home, Katsina.
With over 5,000 members currently from across the state, the community has conducted several activities, including awareness lectures at the Federal Teaching Hospital and General Hospital in Katsina; free genotype testing and free transcranial doppler scan with the help of the community’s haematologist; campaigns targeted at traditional rulers, including the Emir of Katsina to create more awareness of the disease; food support for some of its vulnerable members during Muslim Ramadan fasting, and assistance with medical bills in certain situations.
One of the most notable of its interventions, is the addition of 20 members from financially disadvantaged families, into the Katsina State Contributory Healthcare Management Agency (KTSCHMA). Among them is Sadiya, who has had her hospital bills covered since February 2024.
Ahmad, one of the community’s leading advocates, said Sickle Cell Home Katsina hopes to add more than 10,000 beneficiaries, including those who are not members of the group, to the health insurance scheme to alleviate the disease’s burden on SCD patients and their families in the state. “But in the next two years, we want to see 500 of our members covered by this insurance”, he added.
‘Alarming out-of-pocket expenditure’
According to data from Nairametrics, the monthly cost of treating SCD patients ranges from 70,000 and 1 million Naira. This amount covers frequent hospital admissions, regular medical consultations, physiotherapy, and nutritional supplements.
Muhammad Ibrahim Safana, the Director-General of KTSCHMA, reiterated that adding 10,000 sickle cell patients in the state is feasible because they are vulnerable and have the right to access the insurance scheme, which is one of the mandates of the state-owned health insurance agency.
However, Safana said the government and other non-governmental organisations (NGOs) need to intervene on the potential impact it can have on the select health facilities on the state-based insurance scheme. He explained that many sickle cell patients in a healthcare facility could overburden the healthcare workers and impede quality care.
Safana recognised the importance of regulating the distribution of SCD patients per health facility to minimise any potential strain on each hospital. By enrolling patients to ensure an even allocation across different areas, the concentration of SCD patients would be balanced, reducing the overall burden on the system.
Insured but not assured
Despite the joy of being covered by the insurance scheme that has brought succour to her family, Sadiya said sometimes they do not get all the prescribed drugs at a government-owned hospital.
“Sometimes If [I am] prescribed five drugs, I will [get] one or two to three [of those drugs]. I will be asked to go outside to the hospital to buy it. We are pleading [with the government] to improve on that,” the SCD patient appealed. “We are very grateful, but we hope to start getting all the drugs we need.”
According to Safana, the amount made available as capitation for sickle cell patients is insufficient. He explained that what is allocated to cover SCD patients’ care is not enough for everyone to access healthcare services, hindering the scheme’s implementation progress. However, the National Health Insurance Authority (NHIA), as part of efforts to incentivise healthcare providers has recently increased the capitation by 93% and a fee for service by 378%.
“This may compel other health facilities to withdraw such patients because of the total amount that is paid as capitation may not be enough to take care of them,” Safana noted. “We are looking for a way to augment this kind of situation.”
He also noted that while some patients initially access health care in primary healthcare facilities, they often require treatment at tertiary facilities. However, KTSCHMA only covers care up to the secondary healthcare level, “it ends at secondary healthcare facilities. Anything more than that has to be paid out-of-pocket, or maybe any NGO that is ready to do so,” the official explained.
The benefits of enrolling and covering SCD patients on the state healthcare scheme are obvious, as it alleviates the financial burden, especially for poor and vulnerable families, contributing to achieving Universal Health Coverage (UHC) in Nigeria, which is aligned with the Ministry of Health’s four-point agenda. The programme promotes greater equity and inclusivity in the healthcare system.
While implementing health insurance, particularly for SCD patients through the KTSCHMA is important. It is equally essential to revisit and potentially pass the Compulsory Haemoglobin-Genotype Screening Test bill, which mandates premarital blood testing in Nigeria. Enacting this bill will be a game-changer, significantly curtailing the incidence of SCD by reducing the number of children born with the condition.
In addition, the Katsina State government should increase funding of for the KTSCHMA, to enable the agency to raise the capitation rate. This would not only improve the access to healthcare for SCD patients but also benefit all residents of the state. The funding should also be consistent, ensuring that healthcare services continue to be available to residents regardless of changes in government or the expiration of any administration’s tenure.
