Malawi has issued an urgent call for sustained funding to prevent children with sickle cell disease from dying before their fifth birthday, as health advocates warn that a lack of early diagnosis and consistent care is costing young lives.
The Non-Communicable Diseases Alliance Malawi (NCDAMW) said that without newborn screening and reliable access to treatment, as many as nine in ten children born with the condition in sub-Saharan Africa will not survive early childhood.
The appeal was made to mark World Sickle Cell Day, held this year under the theme "Closing the Survival Gap: Equity in Sickle Cell Care".
Sickle cell disease, an inherited blood disorder, causes red blood cells to become rigid and misshapen, blocking blood vessels and depriving organs of oxygen.
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The condition can trigger severe pain, chronic anaemia, infections, stroke and organ damage.
Around 300,000 babies are born with the disease in sub-Saharan Africa each year
"Sustained investment in prevention, early diagnosis, treatment and long-term care is critical in improving health outcomes and reducing avoidable deaths," said Maud Mwakasungula, the alliance's national chairperson.
Globally, an estimated 7.74 million people live with sickle cell disease, with sub-Saharan Africa and South Asia accounting for nearly 80% of cases.
Malawi adopted the WHO's PEN-Plus strategy in 2021, bringing specialist services for severe chronic conditions to district hospitals in an effort to ease pressure on central facilities.
Since then, more patients have gained access to hydroxyurea therapy, pain relief and infection prevention closer to home.
But Mwakasungula said progress remains uneven. For many rural families, long distances to clinics, transport costs and unreliable drug supplies continue to limit access to care.
The alliance also warned that stigma and misinformation are deepening the crisis, leaving many patients isolated or reluctant to seek help.
"Stronger public awareness and community education can dismantle the stigma that prevents patients from accessing care," Mwakasungula said.
Common warning signs include severe recurring pain, persistent fatigue, frequent infections, swollen hands and feet, jaundice and delayed growth in children.
