Experts, patients, and caregivers have called for stronger health systems, early diagnosis, improved access to treatment and increased community involvement to close survival gaps for people living with sickle cell disease.

This call to action was made at the World Sickle Cell Day Commemorative Scientific Symposium at the University of Zambia’s Ridgeway Campus in Lusaka, held under the theme “Closing the Survival Gap: Equity in Sickle Cell Care.”

The Centre for Infectious Disease Research in Zambia (CIDRZ), the Ministry of Health, the Zambia Paediatric Association, and other partners marked the day, emphasising the urgent need to strengthen care and support for those affected.

Speaking at the event, Lusaka Province Health Director Dr Simulyamana Choonga noted persistent gaps in sickle cell management, particularly in community awareness and healthcare worker knowledge. He said many families continue to face delays in diagnosis and treatment, leading to preventable complications and deaths.

Dr Choonga called for scaling up newborn screening, strengthening medical supply chains, investing in the health workforce, promoting multidisciplinary care and adopting patient-centred approaches. He also stressed the need to address stigma and misconceptions that prevent families from seeking timely care.

He highlighted the World Health Organization’s PEN-Plus programme, supported by CIDRZ, as a key initiative improving care for chronic conditions such as sickle cell disease.

Paediatrician and researcher Dr Mmamulatelo S. Siame stated that addressing sickle cell disease requires shared responsibility among families, schools, caregivers, and communities, not just hospitals.

She emphasised the need to reduce stigma and building supportive environments, noting that patients can lead productive lives with proper care.

Meanwhile, leading haemato-oncologist Dr Narender Kumar Thota from India observed that while treatment advances have improved survival globally, access remains limited in low-income settings.

He identified hydroxyurea as a key treatment in reducing pain crises and hospitalisations, with L-glutamine also helping reduce pain episodes when used appropriately.

And sharing her lived experience, Dr Musonda Mwilwa spoke about stigma, emotional challenges and the importance of treatment adherence. She encouraged patients to seek knowledge and support, noting that understanding the disease improves quality of life.

Caregiver Sylvia Bwalya Mutale Mwansa emphasised the importance of community support and timely medical intervention, sharing that early recognition of symptoms helped save her son’s life during a stroke.

The commemoration concluded with a strong call for collective action to strengthen health systems, improve access to diagnosis and treatment, and eliminate stigma. Participants reaffirmed that with early diagnosis, quality care, and community support, people with sickle cell disease can lead healthy and fulfilling lives.