By Samira Larbie, GNA
Accra, June 20, GNA – Stakeholders at the Third Annual Sickle Cell Disease Conference have called for stronger national commitment, sustainable financing, and increased private sector participation to address the growing burden of sickle cell disease in Ghana.
The conference, organised by the International Sickle Cell Center (ISCC) , in collaboration with the Ministry of Health and the Ghana Health Service, formed part of activities marking the World Sickle Cell Day.
It is on the theme: “The Current State of Sickle Cell Disease in Ghana: Progress Made, Challenges Faced and the Way Forward.”
Speakers at the conference noted the significant gaps in access to screening, treatment, genetic counselling and sustainable support for affected individuals and families, even though Ghana had made progress in awareness creation, policy development and patient care.
Dr Samuel Amo Tobin, Group Executive Chairman of the Tobinco Group, in a speech delivered on his behalf, highlighted the daily realities faced by persons living with sickle cell disease, including recurrent pain crises, repeated hospital admissions, educational disruptions and financial hardship.
He noted that sickle cell disease was not merely a health issue observed on World Sickle Cell Day but a lifelong condition that affected families, schools, workplaces and communities every day.
Dr Tobin commended the ISCC for its advocacy, awareness and patient support efforts over the past five years and disclosed that the Samuel Amo Tobin Foundation and Tobinco Pharmaceuticals Limited had supported the Centre through monthly financial contributions over the past three years.
He, however, emphasized that no major national health challenge should depend solely on the commitment of a few organizations.
“If sickle cell disease is a national public health priority, then the response must also be national,” he said, calling on businesses, foundations, pharmaceutical companies, banks, insurers, media organizations and telecommunications firms to move beyond occasional donations and adopt long-term support mechanisms.
He urged corporate Ghana to view investments in sickle cell interventions not as charity but as investments in human capital, productivity and national development.
“We must move from supporting events to supporting systems, from sympathy to sustainable action,” he stressed.
Mr Kwasi Kyei Darkwah, Presidential Special Envoy to the Caribbean Region, described sickle cell disease as a transatlantic crisis linking Africa, the Caribbean and other regions with shared ancestral ties.
He noted that Africa carried the largest burden of the disease globally, with thousands of children born annually with the condition, while millions more carried the sickle cell trait.
Mr Darkwah called for increased budgetary allocations toward sickle cell interventions and urged young people to actively engage in national policy discussions to ensure healthcare priorities were adequately funded.
“For decades, sickle cell disease has remained one of the most underfunded genetic conditions in the world,” he said.
He advocated stronger partnerships among governments, researchers, healthcare professionals, development partners and philanthropists to improve access to specialized care, diagnostics and life-saving medicines such as hydroxyurea.
Mr Darkwah also encouraged wider uptake of genotype testing before marriage and family planning decisions to reduce the incidence of severe sickle cell disease.
He appealed to governments and donor agencies to intentionally support the International Sickle Cell Centre and expand investments in research, telemedicine, awareness creation and specialized treatment facilities.
Former President John Agyekum Kufuor, in a speech read on his behalf, urged stakeholders to focus on practical outcomes that would directly improve the lives of patients rather than merely producing reports and conference declarations.
He noted that everyone had a role to play in creating sustainable support systems for persons living with sickle cell disease.
Dr Franklin Asiedu Bekoe, the Director of Public Health, delivering a keynote address on behalf of the Director-General of Ghana Health Service, outlined measures being implemented under Ghana’s National Sickle Cell Disease Strategy, including efforts to improve prevention, early diagnosis, treatment and long-term patient care.
He said the Service was strengthening screening, counselling, referral systems and follow-up care while integrating sickle cell services into primary healthcare facilities across the country.
The Ghana Health Service is also leveraging digital platforms, including eTracker, to improve patient registration, monitoring and continuity of care.
Despite these interventions, Dr Asiedu Bekoe acknowledged that challenges remained, including limited newborn screening, inadequate access to genetic counselling, disparities in comprehensive care services and high out-of-pocket costs for many families.
Dr Pascal Kingsley Mwin, Technical Officer World Health Organization (WHO) called on Ghana and other African countries to accelerate efforts to translate existing knowledge, proven interventions, and policy commitments on sickle cell disease into tangible improvements in the lives of affected persons.
Stakeholders at the conference agreed that reducing the burden of sickle cell disease would require sustained investment, stronger partnerships, improved public education, expanded screening programmes and equitable access to quality healthcare services.
They expressed optimism that with coordinated national action, Ghana could significantly improve outcomes for persons living with sickle cell and ensure that the condition no longer limited the dreams, dignity and future of affected individuals.
GNA
Edited by Agnes Boye-Doe