At just seven months old, Sharon Akilo, now 17, was diagnosed with Sickle Cell Anemia (SCA), a genetic disorder that affects the production of hemoglobin in the body, causing red blood cells to become sickled or crescent shaped. This condition would go on to define much of her life, making her a frequent patient at State Specialist Hospital, Ikere-Ekiti, Ekiti state.
Sometimes, Akilo will be admitted for several weeks at a time and her mother, Olorunfemi Adebowale, who cares for her on a teacher's salary will have to bear the exorbitant hospital bills. "I have spent over three million naira or more than that because she gets hospitalised often. In 2009, when she was just one and a half year old, she had an operation at the Federal Medical Centre, Ado-Ekiti, and we spent more than four months [in the hospital]" Adebowale said.
Caring for individuals with SCA can be place significant financial pressure on caregivers, as the disease's symptoms and complications often lead to frequent hospitalisation and regular blood transfusions. This is because of the disorder's destructive impact on red blood cells that blocks blood circulation, triggering painful crisis and organ damage.
In February 2023, the Olanipekun Ayomide Initiative or O.A Initiative, a non-profit organisation partnered with the Ekiti State Health Insurance Scheme (EKHIS) to provide free basic healthcare services through an equity insurance scheme, specifically for people living with the disorder across Ekiti state.
On Wednesday, July 10, 2024, Sharon was scheduled to take her mathematics NECO examination, but unfortunately, she suffered a sickle cell crisis and was hospitalised for three days. Fortunately, her mother, Adebowale, did not have to bear the financial burden of hospital bills this time. "They cover all the hospital bills, everything," Adebowale said. "I don't pay in the hospital again. They really helped us, since May 2023 they've been taking care of us."
The scheme, which currently caters to over 800 individuals with sickle cell in 19 Local Government Areas of the state, gives beneficiaries support during routine hospital check ups, unlimited access to drugs, free malaria treatment and blood screening when they are in crisis.
The initiative's action.
While studying medicine at Ekiti State University in 2019, Ayomide, founder of the O.A initiative, organised voluntary blood donations for sickle cell patients and other vulnerable individuals. By 2022, during her paediatric rotation at the Federal Teaching Hospital Ado-Ekiti, Ayomide observed a concerning trend: many sickle cell patients neglected routine check-ups, only seeking medical attention during a crisis. This insight sparked her passion to address the issue and improve healthcare outcomes for those with SCA.
Approximately, one in four Nigerians carries the sickle cell trait (genotype AS), making it a widespread genetic disorder that affects a significant portion of the population. This prevalence calls for an urgent need for comprehensive healthcare initiatives, public awareness campaigns, and genetic counselling programmes to mitigate the impact of the disease.
"Being a doctor, I spoke to some of them [patients] and one of the things I found out is that they find it difficult to get money to come for routine checkups, even to get their drugs can be challenging for them and so I thought 'what can I do to encourage them?' because routine checkups can help reduce the frequency of crisis and also help with their mental health," Ayomide explained.
She recalled the health insurance lectures she received as a medical student and her non-profit approached the Ekiti State Health Insurance Scheme and advocated for the inclusion of people living with SCA as part of vulnerable people to benefit from its Equity Insurance Programme. The Equity Insurance Programme is a type of insurance plan that aims to reduce financial barriers, particularly for vulnerable populations such as children under five years, pregnant women, orphans, senior citizens, people living with disabilities and people with HIV/AIDS.
Catering for the vulnerable
Since 2020, the Basic Health Care Provision Fund (BHCPF) and the state's Health Insurance have been offering free basic medical care to those eligible. However, it wasn't until May 2023, through the efforts of the O.A Initiative, that individuals living with SCA were specifically included in the equity scheme, ensuring they receive the necessary medical attention and support.
The Initiative also maintains a database of people living with SCA which it shares with the EKHIS to enroll them for insurance and connect them with voluntary blood donors. They also provide emotional and physical support during crisis and hospitalisation. "Registrants only need their National Identity Number (NIN) to register. If you present your NIN at any public health centre, it is computer-based, you will be registered immediately and your information will be captured," Charles Doherty, the General Manager of the EKHIS explained.
Boluwatife Ajimoh is a 15-year-old that was diagnosed with SCA in 2016. "Since then, I've been taking him to the hospital and if I'm to estimate what I've spent so far, it's over six million Naira," Opeyemi Ajimoh, his father and caregiver, noted adding he had to sell his car and other properties in order to afford the hospital bills for his son. "Until the O.A Initiative came on board and linked [us] with the Ekiti State Health Insurance Scheme."
Ajimoh noted that the only expense he now incurs when Boluwatife is hospitalised is the cost of transportation to and from the hospital, as all other medical expenses are covered.
What could be better?
The Ekiti State's BHCPF Equity Insurance Programme only provides people with SCA with basic healthcare services excluding coverage for surgical interventions, operations, and major medical procedures. "It's just for basic care. When they are referred to another hospital, it covers it but when it comes to major surgeries, it [ the insurance] doesn't cover it. Currently, we have a SCA patient that has a brain tumour that needs to be operated on but the health insurance doesn't cover it," Ayomide said.
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The challenge of accurately filing necessary paper-work, especially in rural communities, also affect the smooth operation of the scheme. Healthcare administrators are sometimes slow to process treatment for patients in crisis despite how fatal it can be. "There was a time we had to bring in the commissioner of health in into one of these issues because they asked a patient to go back home and with [the symptoms] they were telling us over the phone, we knew that person could not go back home," Ayomide said.
For now, the O.A Initiative is working with the quality assurance officer of the EKHIS to resolve these issues and fast-track treatment for patients with SCA. The Initiative is also having open discussions with other state governments in Ondo, Kano and Anambra who have a similar insurance programmes to replicate the Equity Insurance Scheme and include people with SCA.
Nigeria stands as the global epicenter of Sickle Cell Anemia. With an estimated 4-6 million people living with SCA, hence it would be beneficial to expand such schemes across the country to ensure that every patient suffering from SCA has a fighting chance.
