Sickle Cell Disease Screening in Haiti

In Haiti, 1 in 150 babies is born with sickle cell disease (SCD), and, unfortunately, without treatment up to 90% will die before their fifth birthday. No national newborn screening or SCD management and education programs existed in Haiti. To address this problem, Boston Children's Hospital Hematologist, Natasha Archer MD, collaborated with Partners in Health in 2013 to develop an SCD screening program at the Hospital University of Mirebalais, focusing on newborn screening and early treatment for children with SCD prior to complications. The program was initially challenged to provide accurate screening for newborns and consistent follow-up care for children with SCD. However, significant progress was made in 2021 when Dr. Archer and Global Health Nursing Fellow, Rose Mintor, conducted a comprehensive needs assessment and quality improvement initiative. Utilizing the Plan Do Study Act (PDSA) approach, the intervention involved various measures, such as providing laboratory training, nursing care coordination, introducing a shared database, and implementing 360 Evaluation and training of community health workers. The primary objective of the intervention was to enhance the number of newborns screened for SCD, improve follow-up and reduce lost-to-follow-up rates. The strategy for achieving this goal involved identifying positive patients using a rapid point-of-care sickle cell test called Sickle SCAN and initiating penicillin treatment before discharge. This approach helped reduce mortality rates associated with sickle cell disease by ensuring that infants with the condition received prompt and effective treatment. The initiative improved timing and accuracy of SCD diagnosis, increased the use of penicillin prophylaxis among children under five-years-old with SCD, increased the availability and use of hydroxyurea in SCD patients, and established patient-family education days to ensure regular follow-ups and standardized education.