Africa must strengthen early diagnosis, expand access to treatment and tackle stigma surrounding sickle cell disease to help patients live full and productive lives, a Ghanaian haematologist has said.
Dr Enam Sefakor Bankas of Korle-Bu Teaching Hospital in Accra made the call during a virtual healthcare discussion, where she highlighted advances in treatment but warned that high costs, limited diagnostic facilities and gaps in long-term care continue to affect patients across the continent.
Sickle cell disease is an inherited blood disorder that causes red blood cells to become rigid and sickle-shaped, potentially obstructing blood flow and triggering severe pain, anaemia, organ damage and other life-threatening complications.
Bankas said treatment should focus not only on preventing deaths but also on enabling patients to complete their education, pursue careers, raise families and participate fully in society.
“We need to think more of thriving than just survival,” she said.
Hydroxyurea improves treatment prospects
Hydroxyurea remains an important disease-modifying medicine for sickle cell disease. It works partly by increasing fetal haemoglobin, which reduces the tendency of red blood cells to sickle, helping to prevent painful episodes and other complications.
In Ghana, the medicine was approved for use in 2018 and added to the National Health Insurance Scheme in 2022, improving access for eligible patients.
Bankas said 20 treatment centres participated in efforts to expand access to hydroxyurea, with approximately 3,648 patients enrolled in treatment.
However, affordability, medicine availability and shortages of specialised services continue to limit access.
Other treatments discussed included crizanlizumab and L-glutamine, which target different mechanisms associated with sickle cell complications. Their availability and suitability vary across countries.
Stem cell transplantation and gene therapies also offer potentially transformative options for eligible patients. However, their high costs, specialised infrastructure requirements and the difficulty of finding suitable donors limit access in many African countries.
Gene therapies involve modifying a patient’s cells to address the underlying disease process before returning them to the body. These treatments require intensive medical care and can carry significant risks, including complications associated with preparatory chemotherapy.
For many patients in sub-Saharan Africa, the cost and complexity of these interventions remain major barriers.
Early diagnosis remains a major challenge
Bankas identified screening and diagnostic capacity as critical gaps in Ghana and other African countries.
Rapid point-of-care tests can help identify people who may have sickle cell disease, particularly in communities where laboratory facilities and reliable electricity are limited. However, positive screening results require confirmatory testing.
More specialised techniques, including high-performance liquid chromatography, can help establish a diagnosis and distinguish haemoglobin types. Their cost and limited availability, however, can delay diagnosis, particularly for low-income families.
Artificial intelligence could also support diagnosis, especially in areas with shortages of laboratory specialists and haematologists.
Bankas said AI-assisted blood-film analysis could help identify suspected cases and guide patients towards further testing. However, such tools require proper evaluation to establish their accuracy, affordability and suitability for routine clinical use.
Ghana introduced national sickle cell disease screening and case-management guidelines for 2025, covering early detection, essential medicines, continuing care, psychosocial support and referral systems.
Bankas stressed that implementing the guidelines would require sustained investment in diagnostic services, reliable medicine supplies, improved patient information systems and stronger referral networks.
Stigma undermines pain management
The discussion also highlighted the challenges patients face when seeking treatment for painful crises.
Bankas said some patients encounter suspicion from healthcare workers who assume they are seeking opioid medicines for non-medical reasons. Such attitudes can result in inadequate pain relief and unnecessary suffering.
Financial difficulties, transport costs and concerns about medication dependence can also discourage patients from seeking care or following prescribed treatment.
She urged healthcare professionals to follow appropriate pain-management protocols, assess patients individually and ensure that stigma does not interfere with treatment.
Public education is equally important, as misconceptions persist that sickle cell disease affects only people of African ancestry, spreads through personal contact or prevents affected people from leading productive lives.
Such beliefs can contribute to discrimination in schools, workplaces and communities.
Genetic counselling should support informed choices
Bankas cautioned against policies intended to prevent births affected by sickle cell disease when they stigmatise patients or restrict personal reproductive choices.
Instead, prospective parents should receive accurate information about inheritance and reproductive risks, alongside access to genetic counselling, prenatal testing and, where available and appropriate, assisted reproductive technologies.
She said scientific advances would have limited impact unless African health systems could provide patients with screening, essential medicines, specialist care and long-term monitoring.
Improving outcomes, she added, requires investment in healthcare infrastructure, research partnerships, informed reproductive choices, compassionate clinical practice and sustained public education.
Conference to examine African healthcare challenges
Ghana’s experience in sickle cell disease management will feature in discussions at the inaugural African Healthcare Conference, scheduled to hold in Accra from December 18 to 19.
The conference is expected to bring together health professionals and other stakeholders to discuss healthcare challenges and generate evidence to inform treatment and policy decisions in African populations.
Interested participants can register through the conference registration portal.
