High Cost of Treatment, Hampering Management of Sickle Cell Disease, Stakeholders Lament

Governments at all levels have been called to include treatment and management of sickle cell disease for sickle cell warriors in the health insurance policy of the country.

The call was also made 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 organized 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, education, civil society groups who took turn to express their dissatisfaction with the responses by relevant organizations, 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 organized a programme to empower sickle cell warriors. Adding that most people with regular business are struggling with the economic realities on ground and people living with sickle cell and their businesses are not left behind.

...Diversity and inclusion

In her contribution, Marketing Expert, Debisi Alokolaro, 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, UTH, Idi Araba, Dr. Olufunto Kalejaiye, lamented that there is not enough information about sickle cell adding that there is a need for more counseling 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. As cheap as the drug is, some people cannot afford it. Sickle cell treatment should be included in the Health Insurance Scheme. Large percentage of sickle cell warriors is not on the Health Insurance Scheme and this is a huge challenge for us and them as well", she said.

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

"Parent and community participation is important in the management of sickle cell. 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 and empowerment

Adebola Adedeji, MD Eco bank Nominees Limited (Member of the Eco bank 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 to empower the warriors and because sickle cell is a disease that limits the individual mentally, emotionally, there is a need for continuous programmes that would help the warriors to overcome the challenge, to be tenacious and resilient.

"There is a need to educate the people more to be able understand and spotlight what the sickle cell warriors are going through.

"We need more stakeholders to take the challenge of assisting in the treatment, management and intervention of sickle cell disease. Beyond sickle cell, there is a need for people to access subsidized health care. We need private partners; we need participation from organizations as part of their corporate social responsibility, CSR", she said.

...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.

"Our mission is to provide comprehensive support and resources, to offer a helping hand, and to foster an environment where every individual affected by sickle cell disease can not only survive but truly thrive.

"We understand that this journey is not without its challenges, but together, we are stronger than any obstacle that stands before us.

"We celebrate our warriors; those who face the daily struggles of this condition with unyielding spirit. They are our heroes, our inspirations, and the living proof that resilience can conquer adversity.

"Together, we can empower a warrior, transform lives, and build a more inclusive, compassionate, and resilient society", she added.

However, Edwin disclosed that the foundation is committed to equipping resilient warriors with financial grants, valuable capacity-building opportunities and inspirational talks designed to amplify their earning potential and fortify their resilience.

According to her, three entrepreneurs received substantial grants for their businesses. As well as extended support through micro grants of N25, 000.00 to 10 deserving individuals along with some consolation gifts.

Admonishing the warriors, the stakeholders said it is important that they know their triggers, learn your limits, be among the community, prioritize tenacity and resilience, do not give up and keep trying. Adhere to doctor's advice,

They admitted that most parents do not know the gravity of the dangers involved in not doing the right thing when it comes to the management of their children.

"You cannot give up on your children. The government should do more to educate, and inform people at the grassroots in different languages on the issue relating to sickle cell.

Diversity and inclusion are important in the management of sickle cell disease. There is strength in diversity. As warriors, we must be involved to make better decisions.

The points of the event were grants and cash gifts given to some sickle cell patients who won the pitch session. Rebecca Adeyemo the winner of the pitch session, while 1st runner-up Asake Motunrayo and Akinkunmi Hibbatullah, the 2nd runner up were given the sum of N250,000, N150,000 and N100,000 respectively.