Sickle cell care in Africa must move beyond survival to help patients live full lives, experts say

Africa must strengthen early diagnosis, expand access to effective treatments and challenge stigma surrounding sickle cell disease if patients are to live full and productive lives, a Ghanaian clinician and sickle cell advocate has said.

Speaking during a virtual healthcare discussion, Dr. Enam Sefakor Bankas, a hematologist at Korle-Bu Teaching Hospital in Accra, Ghana highlighted significant progress in sickle cell disease management, including disease-modifying medicines, stem cell transplantation and emerging gene therapies. However, she warned that these advances will have limited impact unless African health systems address persistent barriers to diagnosis, treatment affordability and continuity of care.

Sickle cell disease is an inherited blood disorder in which abnormal haemoglobin causes red blood cells to become rigid and sickle-shaped. These cells can obstruct blood flow, damage organs and trigger severe episodes of pain, anaemia and other potentially life-threatening complications.

While treatment historically focused on managing pain and complications as they arose, advances in medical research have expanded the options available to patients. “We need to think more of thriving than just survival,” Dr Bankas emphasised, arguing that successful treatment should enable people living with the condition to attend school, complete university education, build careers, raise families and participate fully in society.

Treatment advances offer new hope

According to health experts participating in the session, Hydroxyurea remains an important disease-modifying medicine for sickle cell disease. It works partly by increasing fetal haemoglobin, a form of haemoglobin that helps reduce the tendency of red blood cells to sickle.

The medicine can reduce painful episodes and other complications, improving patients’ quality of life when appropriately prescribed and monitored.

In Ghana, hydroxyurea was approved for use in 2018. Its inclusion in the National Health Insurance Scheme in 2022 represented an important step towards improving access.

According to the clinician, the expansion of treatment services enabled 20 treatment centres to participate in efforts to provide hydroxyurea to children and adults, with approximately 3,648 patients recruited into treatment.

Despite this progress however, challenges relating to affordability, access to medicines and the availability of specialised services remain.

Other disease-modifying treatments discussed during the presentation included crizanlizumab and L-glutamine, which work through different mechanisms to reduce complications associated with sickle cell disease. Their availability, regulatory status and suitability vary across countries.

Stem cell transplantation and gene therapies also offer potentially transformative options for eligible patients. However, these interventions remain difficult to access in many African settings because of their high costs, specialised infrastructure requirements and the challenges of identifying suitable donors or establishing advanced treatment facilities.

Gene therapies use a patient’s own cells, which are modified to address the underlying disease process before being returned to the body. Although these approaches can produce substantial benefits for eligible patients, they require intensive treatment and carry significant risks, including complications associated with the chemotherapy used during preparation. For many patients in sub-Saharan Africa, such treatments remain beyond financial reach.

Early diagnosis remains a critical gap

Dr Bankas identified screening and diagnostic capacity as major obstacles to improving outcomes across Ghana and the wider region.

Rapid point-of-care tests can help identify people who may have sickle cell disease, particularly in community outreach settings where laboratory infrastructure and reliable electricity may be limited. Positive screening results require appropriate confirmatory testing.

More specialised laboratory techniques, including high-performance liquid chromatography, can help establish a diagnosis and distinguish different haemoglobin types. However, their cost and limited availability can delay diagnosis, particularly for families with limited financial resources.

Artificial intelligence could eventually help strengthen diagnostic services, particularly in areas with shortages of laboratory specialists and haematologists.

Dr Bankas noted that AI-assisted analysis of blood films could potentially support the identification of suspicious cases and help direct patients towards further testing. However, established national or continent-wide AI-enabled diagnostic systems were not identified during the discussion.

Researchers and technology developers were encouraged to collaborate with clinicians to evaluate whether such tools could improve the accuracy, accessibility and affordability of sickle cell diagnosis.

Ghana recently introduced national sickle cell disease screening and case-management guidelines for 2025, placing emphasis on early detection, essential medicines, continuing care, psychosocial support and referral systems.

However, the clinician stressed that publishing guidelines is only the beginning adding that effective implementation will require investment in diagnostic services, reliable medicine supplies, better patient information systems and stronger referral networks.

Pain management and stigma undermine patient care

Beyond access to medicines, the discussion highlighted the need to improve how healthcare professionals understand and respond to sickle cell pain.

People experiencing painful crises sometimes encounter suspicion that they are seeking opioid medicines for non-medical reasons. The clinician cautioned that such assumptions can lead to inadequate pain relief and unnecessary suffering.

Patients may also fear medication dependence, experience financial difficulties or struggle to afford transport to healthcare facilities.

In some cases, patients who begin to feel better may ration prescribed pain medicines because they are concerned about future episodes or cannot afford another hospital visit.

The clinician argued that healthcare workers must follow appropriate pain-management protocols, assess patients individually and avoid allowing stigma to interfere with treatment.

The discussion also highlighted widespread misconceptions about the disease, including beliefs that it affects only people of African ancestry, can be transmitted through personal contact, or necessarily prevents those affected from living productive lives.

Public education is therefore essential to counter discrimination in schools, workplaces and communities.

Genetic counselling requires informed choices

While some countries have introduced mandatory screening or other measures intended to prevent affected births, the clinician cautioned against approaches that stigmatise people living with the condition or restrict their personal choices.

Instead, prospective parents should receive accurate information about inheritance, reproductive risks and available options, including genetic counselling, prenatal testing and, where accessible and appropriate, assisted reproductive technologies.

Nevertheless, Dr Bankas warned that scientific advances will not deliver equitable outcomes unless patients across Africa can access them. “New therapies may attract global attention, but their impact remains limited when healthcare systems lack the resources to provide screening, essential medicines, specialist care and long-term monitoring,” she said.

The message to African governments was clear: improving sickle cell outcomes requires more than new medicines. It demands investment in healthcare systems, stronger research partnerships, informed reproductive choices, compassionate clinical practice and sustained public education.

Research must translate into equitable access

Ghana’s experience in sickle cell disease management will be among topics set for discussion during the African Healthcare Conference when health experts across the world converge in Accra from December 18- 19.

Ghana’s participation and hosting this international health conference offers opportunities to generate evidence that can inform treatment decisions in African populations.

The findings from the conference will help improve health outcomes across the continent.

The post Sickle cell care in Africa must move beyond survival to help patients live full lives, experts say appeared first on KBC Digital.