Stakeholders have raised concerns about the prohibitive expenses associated with treating sickle cell disease, asserting that it poses significant obstacles to the disease’s effective management. They are urging government authorities at all levels to incorporate treatment and management of sickle cell disease into the country’s health insurance policies, along with promoting diverse, inclusive, and equitable support systems for individuals living with the condition.
These calls were made during the recently concluded Project Empower, a Warrior 2.0 event organized by the CrimsonBow Sickle Cell Initiative (SCI) aimed at equipping sickle cell warriors with the tools to conquer the challenges they face. At the event, it became evident that many individuals with sickle cell disease grapple with formidable financial challenges stemming from the exorbitant costs of treatment, frequent hospital admissions, and the overarching high cost of living.
Various stakeholders from the finance, health, and education sectors, as well as civil society groups, expressed their dissatisfaction with the responses from relevant organizations and government bodies regarding the management and treatment of sickle cell disease. They revealed that most sickle cell warriors, along with their guardians, parents, and families, face intense financial challenges when accessing treatment and interventions.
Timi Edwin, the Founder and CEO of CrimsonBow SCI, emphasized the multifaceted challenges posed by sickle cell disease, including health, financial, and mental health concerns. She emphasized the need for empowering sickle cell warriors both economically and mentally and urged the government to play a pivotal role in their management and treatment, particularly in terms of entrepreneurship.
The event, themed “Adapt and Thrive: Empowering Resilience in the New Economy,” underscored the importance of instilling hope in sickle cell warriors, particularly in the current economic climate, where both those with regular businesses and individuals living with sickle cell face financial challenges.
In addition to addressing the financial aspects, stakeholders stressed the importance of promoting diversity, equality, and inclusion within the sickle cell space. They called for creating opportunities for sickle cell warriors to thrive in society, recognizing their resilience and the need for inclusive policies and programs. Sensitization efforts regarding sickle cell disease were also emphasized, and there was a call for the government to embark on awareness programs to inform people about the consequences of the condition and to empower warriors to advocate for themselves.
Consultant Physician/Dermatologist, Dr. Olufunto Kalejaiye, pointed out the lack of information about sickle cell and the importance of counseling and regular follow-up visits in disease management. Early diagnosis, community participation, and access to specialists for sickle cell warriors were also identified as crucial factors in the effective treatment and management of the condition.
Stakeholders also stressed the need for advocacy, education, and empowerment in addressing the challenges faced by people with sickle cell disease and urged a collaborative approach to support, uplift, and empower those living with the condition, transforming adversity into opportunity, despair into hope, and vulnerability into resilience.
