Kinshasa, june 22nd, 2025 (CPA).- A scientific policy, based on reliable statistics, was advocated on Saturday in Kinshasa, the capital of the Democratic Republic of Congo (DRC), to support parents of children with sickle cell anaemia, at an awareness and advocacy day on the disease. ‘We will be asking for scientific policy that can provide reliable statistics
so that we can work together to ensure that the commune can support parents in difficult situations in caring for their sickle cell children’, said Séverin Lumbu, mayor of the commune of Mont-Ngafula. ‘This will enable us to put together projects to approach donors. Why not set up a communal fund to combat sickle cell anaemia, so that parents can obtain medicines either free of charge or at a low price,’ he added. According to the municipal authority, sickle cell disease causes health, financial and physical damage to society, and also generates poverty.
On behalf of the President of the Republic, he congratulated the parents, the scientific team and Mrs Denise Nyakeru Tshisekedi, First Lady of the DRC, for their commitment, dedication and involvement in the fight against sickle cell disease. For her part, Mrs Solange Banza, a parent of sickle cell children, appealed to the authorities to provide care for children suffering from sickle cell disease. ‘Managing the pain of a sickle cell child is no easy task. That’s why we’re sounding the alarm to the government representatives in this room. You can plead our case. As we wait, there is the problem of tuberculosis and HIV, which the government has been dealing with for some years now. We’re also asking the government to think about us and take care of our children’, he pleaded.
‘There are products like hydroxyurea, which our children are supposed to be taking to stabilize their health a little. It’s not as cheap as we might think. Because it’s a product they take almost every day of their lives. But it’s not easy. That’s why we’re sounding the alarm to the Government, if it can organize something for our children, to support them’, she added. Sickle cell disease discrimination and stigma decried Christelle Vuanga, national MP for the electoral district of Funa, also decried the stigma surrounding sickle cell anaemia in the DRC.
‘Fighting prejudice in society, as well as discrimination and stigmatization under the law in the DRC, is our battle. I didn’t understand why an employer doesn’t have the right to dismiss someone with HIV, but an employer can dismiss someone with sickle cell anaemia on the grounds that they have a lot of fits and you have to leave. And people with sickle cell disease are not protected by law’, she lamented. ‘Sickle cell disease is an issue that concerns us all. We have to fight this battle to the end’, she added, before pointing out that the sickle cell anaemia sufferer’s biggest battle is also race, and that access to medicines is not as easy as it should be, given the realities of the country. She also stressed the importance of a warm welcome for patients, which she said contributed to 50% of their recovery. The event was organized to coincide with International Sickle Cell Day, celebrated every year on June 19th, by the biomedical research institute ‘One Health’, through its Sickle Cell Support, Training and Monitoring Platform (Pafoved), in collaboration with the Health Support Training Centre (Cefa/Monkole). International Sickle Cell Day The main aim of World Sickle Cell Day, celebrated every year on June 19th, is to raise public awareness of this genetic disease, provide information about its consequences and mobilize resources for research and improved patient care.