Unequal Care Fuels Sickle Cell Deaths
By Francis Maingaila ♥️
Lusaka, Zamvia24. -- (June 19, 2026) — Zambia has the tools and treatments needed to manage sickle cell disease, but lives are still being lost because access to care, awareness, and equity remain inadequate.
Lusaka Province Health Director Dr Aspha Choonga delivered the warning as he officiated the World Sickle Cell Day Scientific Commemorative Symposium and Patient Summit in Lusaka under the theme, “Closing the Survival Gap – Equity in Sickle Cell Care.”
Dr Choonga said Zambia continues to face a clear survival gap, where children born in well-served urban areas have better chances of survival compared to those in underserved communities.
He also highlighted the heavy human burden of the disease, describing the emotional, financial, and social strain placed on families.
“Sickle cell disease does not affect only the patient. It affects entire families, workplaces, and communities,” he said.
Dr Choonga noted that Zambia has made progress in expanding sickle cell services, including specialised care units across provinces, training of health workers, clinical guidelines, hydroxyurea availability in major facilities, newborn screening initiatives, and improved diagnostics in selected centres.
However, he said major inequalities remain. Most specialised services are still concentrated along the line of rail, leaving rural areas with limited access to care.
He also pointed to weak supply chains, workforce shortages, and the absence of a national sickle cell strategic plan.
He called for a dedicated national strategy to improve coordination, guide investment, and strengthen resource allocation for sickle cell care.
Dr Choonga further urged the use of digital health platforms and emerging technologies, including artificial intelligence, to extend specialist services to remote areas and improve efficiency within the health system.
He stressed that research, innovation, and international collaboration are essential to expand access to advanced therapies, which remain costly and out of reach for most patients.
On social challenges, he warned that stigma and misinformation continue to worsen the burden on families, calling for stronger public education and community engagement.
The symposium brought together health workers, researchers, policymakers, and patient advocates, with discussions focusing on both clinical improvements and lived experiences of affected families.
Medical experts reinforced the urgency of early diagnosis and prompt treatment, warning that delays continue to drive preventable complications and deaths.
Speaking during a clinical discussion, paediatrician Dr Riebeck Kamanga said many patients are still referred late to higher-level facilities, often in severe vaso-occlusive pain crises.
He said sickle cell disease is too often treated as a last-resort condition, leading to preventable complications that could be avoided with early care at lower-level facilities.
Dr Kamanga explained that sickle cell disease is an inherited blood disorder where abnormal haemoglobin causes red blood cells to become rigid and sickle-shaped, especially during infections, dehydration, cold weather, or low oxygen.
These cells block small blood vessels, causing severe pain, anaemia, inflammation, and organ damage.
He stressed that pain crises are medical emergencies requiring immediate treatment.
“Delays in providing pain relief and supportive care only worsen outcomes and prolong suffering,” he said.
He said effective management requires rapid assessment, hydration, and appropriate pain control, including strong analgesics when necessary.
Dr Kamanga added that the disease occurs when a child inherits two abnormal haemoglobin genes, one from each parent, while carriers with one gene usually do not develop symptoms.
He said genetic counselling is important in reducing stigma and improving family understanding.
Although treatments such as hydroxyurea, folic acid, and supportive care improve outcomes, access remains uneven across the country.
He noted that stem cell transplantation is currently the only curative option but remains largely unavailable due to cost.
Dr Kamanga also called for a multidisciplinary approach involving clinicians, nurses, and psychosocial support teams to improve long-term care.
Medical expert Dr Uzima Chirwa described hydroxyurea as one of the most important advances in sickle cell treatment.
“Hydroxyurea is a proven, effective treatment for sickle cell disease, and it can significantly reduce suffering and complications if it is used correctly and consistently,” he said.
He explained that sickle cell disease is driven by haemoglobin S polymerisation, which makes red blood cells rigid and prone to blocking blood vessels, leading to pain, anaemia, and repeated hospital admissions.
He added that inflammation and white blood cell activity worsen vessel blockage even without infection.
Dr Chirwa said hydroxyurea works by increasing fetal haemoglobin, improving oxygen delivery and reducing sickling.
“This leads to better oxygen delivery, improved blood flow, and a marked reduction in painful crises,” he said.
He noted that the drug also reduces inflammation, improves red blood cell flexibility, and lowers vessel adhesion.
He cited studies such as the BABY HUG trial, which showed hydroxyurea can be safely used in infants from nine months, with significant benefits.
African studies have also shown reduced hospital admissions and improved quality of life when the drug is properly used and monitored.
However, he stressed the need for careful monitoring through regular blood tests and clinical follow-up.
He warned of risks such as bone marrow suppression and advised careful use, especially during pregnancy or in patients with very low blood counts.
Dr Chirwa said treatment may need temporary interruption in cases of toxicity, with reintroduction at lower doses once stable.
He concluded that hydroxyurea has transformed sickle cell care, but its success depends on correct use, monitoring, and patient adherence.
“Hydroxyurea works, but its success depends on correct use, monitoring, and commitment to therapy,” he said.
Health experts agreed that while Zambia has made progress in sickle cell care, unequal access, delayed diagnosis, and weak systems continue to fuel preventable deaths.
Comments
Post a Comment