Liberia: As Many as 1,600 Babies Are Born With Sickle Cell Disease Each Year and Up to Half Die Needlessly Before 5. Finally the Government is Doing Something About it

Summary: Sickle cell disease is an inherited blood disease that kills up to half of the 1600 Liberian babies born with it each year before age 5. Until now most of them have died without ever knowing they had it. Low-cost care can help children with sickle cell live long lives, but Liberia has lacked the testing, medicine and specialists to provide it. Some patients leave the country for treatment. The government is now working on a plan to expand treatment. Most babies are never tested. Three hospitals in three of Liberia’s 15 counties now test newborns for sickle cell. The government plans to test in every county by 2030. And there are plans for a national count of how many people have the disease. By Gloria Wleh, senior reporter with New Narratives 72ND COMMUNITY, Montserrado County — Suitcases are being packed here for yet another flight.

For 19-year-old Tilnette Woods and her mother, Johnetta Harris-Kamara, plane journeys have become part of their lives. Tilnette has sickle cell disease, an inherited condition that changes the shape of red blood cells, making them difficult to flow through the body. It causes extreme pain and frequent infections. Untreated, it kills half of the Liberian children born with it by the age of five. Restricted blood flow to Tilnette’s hip bones has caused them to crumble and die. Now, she has travelled to India for her second hip replacement surgery. She had the first hip replaced in Nigeria in 2023. Mother and daughter know this is another stopgap measure. Until now, it has been impossible to get the medicine and support she needs to stay alive in Liberia. “What am I coming back to? ” Tilnette asks. “Am I coming back to a country that is going to give up on me? Like it always been giving up on me? ” Through her family’s sacrifice and…