•Urge govt to prioritize sickle cell management health insurance scheme

By Ebunoluwa Sessou 

Government at all  levels have been called upon to include treatment and management of sickle cell disease for sickle cell warriors in the health insurance policy of the country and to ensure sustainable diversity, equality and inclusion packages for sickle cell warriors in all spheres of governance.  

The call was made at the just- concluded Project Empower, a Warrior 2.0, equipping sickle cell warriors with what it takes to be conquerors organised by CrimsonBow Sickle Cell Initiative, SCI. At the event, it was revealed that many of the individuals living with sickle cell disease grapple with formidable financial challenges, stemming from the exorbitant costs of treatment, frequent hospital admissions and overarching high cost of living.  

Finance Different stakeholders from the finance, health and education sectors and civil society groups who took turns to express their dissatisfaction with the responses by relevant organisations and government in the management and treatment of sickle cell disease, disclosed that most sickle cell warriors and their guardians, parents, as well as families are faced with intense financial challenge when accessing treatment and intervention.  

In her speech, Timi Edwin, Founder/CEO CrimsonBow SCI, lamented that sickle cell comes with many challenges including health, finance, mental health among others; adding that sickle cell warriors need to be empowered economically and mentally.

 “We have called on the government to intervene in the management and treatment of sickle cell warriors. Government should not ignore sickle cell warriors in the area of entrepreneurship”, she said. 

With the theme: Adapt and Thrive: Empowering Resilience in the New Economy, Edwin noted that there is a need to give hope to the sickle cell warriors.

 “This theme underscores our adaptability in the face of a changing world, our commitment to thrive and our unwavering belief that together, we can shape a brighter future for our warriors. 

“With the economic situation of the country, it was pertinent that we organised a programme to empower sickle cell warriors,” noting that most people with regular businesses are struggling with the economic realities on ground and people living with sickle cell and their businesses are not left behind. 

Diversity, inclusion 

In her contribution, Marketing Expert, Debisi Alokolaro said there is a need for diversity, equality and inclusion in the sickle cell space.

“Nigerians should give opportunities to sickle cell warriors to thrive in the society. Sickle cell warriors are tenacious, resilient and employers of labour should give them opportunity to showcase this part of themselves. There should be opportunities through inclusive policies and programmes.

 “There is a need for sensitization around sickle cell condition. It is not enough for people to say that AS and AS genotypes cannot marry. People need to know the consequences of being culpable. The government should embark on sensitization programmes so that people can know the dangers of sickle cell disease and for those warriors to be able to help themselves.”

Management of sickle cell disease

Consultant Physician/Dermatologist, LUTH, Idi Araba, Dr. Olufunto Kalejaiye, lamented that there is not enough information about sickle cell adding that there is a need for more counselling in the management of sickle cell as well as regular follow up visits to the centre where treatment and care can be accessed.

“Money is challenging for the warriors and non-warriors in the management of sickle cell disease.” 

On treatment, she said, early diagnosis is important in the treatment and management of sickle cell disease. This helps to prevent many complications.

“Parents and community participation is important in the management of sickle cell disease. We must not isolate the children, we must be able to seek care early, and we must be able to know where and when to access the hospital for treatment. We must be aware of the complications of the disorder and the strategy to use in managing it.

“Sickle cell warriors should be attached to centres where there are specialists to manage them,” she added.  

Advocacy, education, empowerment

 Adebola Adedeji, MD, Ecobank Nominees Limited (Member of the Ecobank Group), lamented that there is not enough information around sickle cell and these challenges are contributing to lack of advocacy, education and empowerment of the  people.

“We need to advocate for policies for the sickle cell warriors; we need to educate warriors so as not to make Nigeria become headquarters of sickle cell patients.

“We need more stakeholders to take the challenge of assisting in the treatment, management and intervention of sickle cell disease.”  

As a community 

Meanwhile, the Chairperson, Mrs. Folashade Shinkaiye, said: “As a community united by a common purpose to empower, inspire, and uplift those in need, embarking on the transformative journey, it is important to celebrate the power of collaboration, the strength of unity and the promise of positive change.”

Edwin stressed that Project Empower a Warrior was born out of a shared commitment to make a difference.

“It was conceived not merely as an initiative but as a symbol of our collective resolve to support, uplift and empower those living with sickle cell disease.

“It embodies the belief that adversity can be transformed into opportunity, despair into hope and vulnerability into resilience.”