Ekiti stakeholders demand strong policy on management of sickle cell disease

Stakeholders in Ekiti State have called for the development of a comprehensive policy framework to strengthen the prevention, treatment, and management of sickle cell disease in the state.

They argued that a coordinated government-backed strategy is critical to improving the quality of life of people living with the condition.

The call was made in Ado-Ekiti, the state capital, during a stakeholders’ strategic meeting organised by Olanipekun Ayomide Initiatives, where participants deliberated on a proposed five-year strategic roadmap (2026–2031) for sickle cell disease management in the state. The event also featured the graduation of 29 participants under the Sickle Cell Action Community Health Fellowship.

Speaking at the programme, the Executive Director of OA Initiatives, Dr. Ayomide Olanipekun, said although the Ekiti State Government had demonstrated commitment to supporting people living with sickle cell disease through health insurance coverage and other interventions, the state still required a robust policy framework to institutionalise and sustain such efforts.

She explained that the proposed roadmap would provide a clear direction for prevention, healthcare delivery, access to treatment, public enlightenment, anti-discrimination measures and long-term support for sickle cell patients.

According to her, the organisation is advocating the establishment of a dedicated sickle cell referral centre in the state as part of efforts to improve specialised care.

“In Ekiti State, we do not yet have a comprehensive framework guiding the management of sickle cell disease. Government has been supportive, but we need a policy that will strengthen and sustain these interventions.

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“Our ultimate goal is to have a dedicated sickle cell referral centre in the state. We are advocating that the government should develop and implement this framework as soon as possible,” she said.

Olanipekun explained that OA Initiatives has continued to champion awareness campaigns, advocacy, voluntary blood donation and community engagement aimed at reducing stigma associated with sickle cell disease while promoting early diagnosis and access to quality healthcare.

She noted that the fellowship programme was designed to equip young people with adequate knowledge of sickle cell disease and voluntary blood donation so they could return to their communities as advocates against discrimination.

“We want them to educate people that having sickle cell disease is never a reason to stigmatise anyone. People living with the condition deserve love, acceptance and equal opportunities,” she said.

The Executive Director revealed that fellows underwent genotype testing and participated in voluntary blood donation exercises, with many donating blood for the first time without any financial inducement.

She added that OA Initiatives had also partnered with the Ekiti State Government to facilitate the enrollment of over 700 persons living with sickle cell disease into the state’s health insurance scheme across the 16 local government areas.

According to her, the initiative has significantly reduced the financial burden of treatment on affected families and encouraged more people to seek medical care.

Reflecting on the organisation’s journey since 2023, Olanipekun said participation in its sickle cell programmes had grown remarkably through sustained advocacy, community outreach, market campaigns, training programmes, webinars and blood donation drives.

Dr Ibrahim, who represented the Commissioner for Health, Dr Filani Oyebanji, commended OA Initiatives for complementing government efforts in improving the welfare of people living with sickle cell disease.

He said the administration of Governor Biodun Oyebanji remained committed to ensuring that people living with the condition receive quality healthcare and are protected from discrimination and social exclusion.

He urged participants to use the strategic planning session to make concrete commitments that would translate into practical improvements in sickle cell care across the state.

“Your presence here shows that this is a priority we all take seriously. Let this engagement produce clear commitments that will strengthen sickle cell care in Ekiti,” he said.

Delivering the keynote address, Dr Olumide Obe highlighted the burden of sickle cell disease in Nigeria, stressing the need for sustained public education, genetic counselling, improved healthcare infrastructure and legal protections against discrimination.

He advocated the adoption of a comprehensive policy that would guarantee sustainable care and improve the overall wellbeing of people living with sickle cell disease.

The proposed strategic roadmap is expected to be implemented in three phases, beginning with the development of critical infrastructure and institutional frameworks, followed by system integration and expansion, before culminating in consolidation and sustainability over five years.

Stakeholders at the meeting identified inadequate access to specialised healthcare, limited availability of safe blood, weak policy implementation, and persistent social stigma as major challenges requiring urgent attention.

The event concluded with the presentation of certificates to 29 graduates of the Sickle Cell Action Community Health Fellowship, who are expected to serve as community advocates in promoting awareness, voluntary blood donation, and support for people living with sickle cell disease across Ekiti State.