The Founder of the Focus on Sickle Cell Foundation (FoSCel), Amos Andoh, has called for a fundamental change in the way Ghana educates young people about sickle cell disease, arguing that greater emphasis must be placed on confronting stigma, misinformation and stereotyping alongside medical treatment.

Speaking to the press on Tuesday, September 29, at the Kwame Nkrumah Memorial Park, Mr Andoh said Ghana's response to sickle cell disease could no longer be confined to hospitals and families directly affected by the condition.

He said sickle cell disease should be treated as a national health, education and generational issue, with schools playing a central role in ensuring that children and young people understand the condition before they reach adulthood.

“We do not want to create awareness alone. But we want to turn awareness into knowledge. Then knowledge into decisions, and decisions into a healthier community,” Mr Andoh said.

He said the foundation's advocacy was driven by the belief that education about sickle cell disease must begin early, rather than waiting until young people reach the stage of forming relationships and considering marriage.

A major concern raised by Mr Andoh was the stigma and stereotyping experienced by people living with sickle cell disease.

He said misinformation about the condition could contribute to social isolation and discrimination, including misconceptions about the capabilities of people living with sickle cell disease.

“Sickle cell disease is not contagious,” he said, stressing that people cannot acquire the condition through playing with, associating with or otherwise interacting with someone who has it.

He also urged members of the public to stop treating people living with sickle cell disease as incapable of contributing meaningfully to society.

Mr Andoh said the stereotyping of people living with the condition could extend into the workplace, where, he said, some employers might question their ability to perform their duties because of concerns about their health.

“We should not eliminate, we should not exclude them when it comes to employment,” he said, appealing to both public and private institutions to provide opportunities for people living with sickle cell disease.

He argued that living with the condition should not be regarded as a barrier to pursuing a career, holding public office or contributing to national development.

“Sickle cell disease is not a death sentence,” Mr Andoh said. “You can do everything possible as a sickle cell warrior. You can also even be any other visionary that you want to be.”

He said people living with the condition could become professionals, public officials, entrepreneurs, musicians and workers in a wide range of sectors.

“You can be a president, a minister, you can be an MP, you can be a government worker, a private worker. You can be a musician. So don't let sickle cell disease isolate you,” he added.

Mr Andoh said one of the foundation's central arguments was that sickle cell education should be incorporated into Ghana's formal education system so that young people receive accurate, age-appropriate information while still in school.

He said discussions about genotype compatibility often began only when young adults were already entering relationships or considering marriage, which could make it difficult to introduce important information at a stage when emotions and relationships were already deeply established.

“For many years now, serious conversation about sickle cell disease and genotype compatibility begins when young adults are already old enough to enter into relationships and marriages,” he said.

“By then, it may be difficult to introduce knowledge that should have been already provided to our young adults because love and affection, we believe, is very strong.”

Mr Andoh said the objective was not to dictate personal decisions to young people, but to ensure that they had sufficient knowledge to make informed decisions about their health and future families.

“We cannot wait until consequences that have already occurred before we begin the education,” he said.

He therefore called for young people to receive accurate information about sickle cell disease, genotypes and genotype compatibility before they reach adulthood.

Mr Andoh said the foundation's approach was based on moving beyond conventional awareness campaigns.

He said awareness was only the first step and should ultimately lead to knowledge, informed decision-making and healthier communities.

“When people understand sickle cell disease early, they are better positioned to know their genotype, understand their condition, and challenge misinformation,” he said.

According to Mr Andoh, the need for education is particularly important because misconceptions can affect not only medical decisions but also the way people living with sickle cell disease are treated within their families, communities, schools and workplaces.

He said education could help challenge stereotypes before they became entrenched.

As part of its advocacy, FoSCel has developed an educational comic model designed to make information about sickle cell disease more accessible to children and young people.

Mr Andoh said the initiative followed an awareness programme conducted by the foundation in collaboration with the Ghana Education Service in the Efutu District last year.

The experience, he said, demonstrated that complex health information could be presented through storytelling and visual material in ways that young learners could understand more easily.

He said the comic model was designed for learners at basic, junior high school and senior high school levels.

“A well-designed story can make difficult health information very simple, relatable and memorable for our young learners,” Mr Andoh said.

The material addresses several aspects of sickle cell disease, including what the condition is, the meaning of genotype, genotype compatibility and ways of supporting people living with the condition.

Importantly, he said, the comic also addresses stigma and stereotyping.

“This is what our young learners need to know before they grow up to face these health decisions that will eventually transpire to bring forth a child living with sickle cell disease,” he said.

The foundation believes that presenting the subject through pictures and relatable stories can help young people engage with information that might otherwise appear difficult or overly technical.

Mr Andoh said FosCel had also been advocating for the inclusion of sickle cell education in Ghana's national education curriculum.

Earlier this year, he said, the foundation submitted a policy proposal calling for greater attention to sickle cell education within Ghana's education system.

He said the foundation had engaged the Director-General of the National AIDS Control Council (NACA) and the Chairperson of the Parliamentary Select Committee, both of whom, according to Mr Andoh, expressed interest in supporting the initiative.

Following its engagement with NACA, the foundation submitted educational material developed to support its policy proposal.

Mr Andoh said the comic material was formally presented to NACA on Sunday, with the foundation now awaiting professional assessment and feedback from relevant stakeholders.

“We welcome the professional review of NACA and appropriate stakeholders as we work [towards] strengthening education on sickle cell disease in Ghana,” he said.

He expressed hope that the material would receive further consideration as part of the broader discussion on sickle cell education.

Mr Andoh cited figures attributed to the Ministry of Health and the World Health Organisation indicating that approximately 18,000 babies are born with sickle cell disease in Ghana every year.

He said the figure represented more than a statistic, arguing that behind every case were families dealing with the medical, emotional and financial consequences associated with the condition.

“These are not just numbers. Behind every statistic, there is a person. Behind every complication, there are families and societies that are putting much and heavier burden on them. Behind every warrior, there is a story to tell,” he said.

He said the scale of the condition required a national response involving the health and education sectors as well as communities and employers.

“If sickle cell disease is a health reality that affects almost thousands of Ghanaians ... we shouldn't look after it without making any tangible solutions,” he said.

Mr Andoh acknowledged the importance of healthcare interventions and commended the Ministry of Health, Ghana Health Service and National Health Insurance Authority (NHIA) for efforts to improve access to care for people living with sickle cell disease.

He specifically welcomed the inclusion of hydroxyurea and other essential sickle cell medicines in the National Health Insurance Scheme's benefits package.

He encouraged people living with sickle cell disease and their caregivers to engage with the available health system and ensure that their NHIS membership remained active so they could access covered medicines and treatment.

However, he argued that medical treatment alone could not address the broader challenges associated with the condition.

“Education must go hand in hand with healthcare,” Mr Andoh said. “Let our teachers teach what our doctors treat. And that is our message.”

He said people living with sickle cell disease could experience serious complications and that some of these could impose significant financial pressures on families.

Among the complications he mentioned were kidney problems, stroke, heart-related complications and vascular necrosis, a condition involving damage to bone tissue.

He said some procedures could also be prohibitively expensive for families, reinforcing the need for prevention, early knowledge, appropriate healthcare and social support.

Mr Andoh also disclosed that he personally lives with sickle cell genotype SC, saying his advocacy was informed by his own experiences as well as those of other people living with the condition.

“Myself, I'm also a person living with sickle cell genotype SC,” he said.

He said he experienced pain and complications associated with the condition and was aware that many other people living with sickle cell disease faced similar challenges.

Mr Andoh said the physical burden of the disease could be compounded by the psychological and social pressures created by how communities perceive people living with the condition.

He therefore called for greater empathy and understanding from the public.

The FoSCel founder called on the Ministry of Health, Ghana Health Service, NHIA, Ministry of Education, Ghana Education Service and NACA to support efforts to strengthen sickle cell education and policy.

He said the foundation wanted stakeholders to recognise that treating complications after they occur was not sufficient and that greater emphasis should be placed on prevention, education and informed decision-making.

“Why are we waiting for our children to be born before we can start the treatment?” he asked.

He acknowledged that sickle cell disease currently has no widely available cure in Ghana and said the cost of managing severe complications could place considerable pressure on families.

For Mr Andoh, the long-term response must therefore combine medical care with education capable of helping young people understand the condition before they reach the point of making decisions about relationships and reproduction.

The setting of Mr Andoh's address at the Kwame Nkrumah Memorial Park also formed part of his broader message about responsibility across generations.

Reflecting on the significance of the memorial site, he said it represented an important milestone in Ghana's history and should remind citizens that each generation has a responsibility to improve the future for those who come after it.

“That represents an important milestone for the Republic of Ghana. And in the history of Ghana, this place will continue to be a monument for the entire country. And it tells us one thing: every generation has a responsibility to make the future better for the next generation that follows,” he said.

He said that principle was central to FoSCel's campaign for stronger sickle cell education.

The foundation, he said, wanted Ghana to move from simply reacting to sickle cell disease to building a society where young people had the knowledge to understand the condition, challenge misinformation and reject discriminatory attitudes towards those living with it.

At the heart of Mr Andoh's appeal was a rejection of the perception that sickle cell disease automatically prevents people from living productive lives.

He urged families, employers, educational institutions and government agencies to recognise the abilities of people living with the condition rather than defining them by their diagnosis.

“Sickle cell disease is not a death sentence,” he reiterated.

His comments placed particular emphasis on the distinction between managing a medical condition and defining an individual by that condition.

For FoSCel, addressing stereotypes is therefore not an optional addition to medical care but an essential component of the wider response to sickle cell disease.

Mr Andoh argued that when children learn about sickle cell disease in an age-appropriate and factual manner, they can grow into adults better equipped to understand the condition and less likely to perpetuate misconceptions about those living with it.

Mr Andoh urged the media to help broaden public understanding of sickle cell disease by reporting on the condition accurately and giving greater visibility to the experiences of people living with it.

He also appealed to Ghanaians to support efforts to incorporate sickle cell education into the national curriculum.

“We urge all Ghanaians and the media as such to spread this information,” he said.

For the FoSCel Foundation, the objective is ultimately to establish a sustained national approach in which healthcare, education and social inclusion reinforce one another.

The foundation maintains that Ghana's response to sickle cell disease must extend beyond treating pain and complications after they arise. It must also address the misinformation, stigma and stereotyping that can affect people living with the condition throughout their lives.

As Mr Andoh put it, “Let our teachers teach what our doctors treat.”

For the foundation, that means ensuring that the next generation does not encounter sickle cell disease for the first time when confronted with a diagnosis, a relationship or a family crisis, but instead grows up with accurate knowledge, greater understanding and a more informed attitude towards those living with the condition.