PROTECTED AND PROUD IN COVID-19

I invite you to join with us as we observe World Sickle Cell Awareness Day 2020under the theme, ‘Sickle Cell Community: Protected and proud in a time of COVID-19’. In order for a child to be born with SCD, both parents must have a gene that affects the production of hemoglobin, and at least one must be a sickle gene. Fifteen percent of Jamaican adults have such a gene; 10% sickle gene, 5% another gene. This is why all of us Jamaicans should know our own status, as well as that of our partners, potential partners and children. If you are unsure, I invite you to visit your healthcare provider to be tested. The risk of premature death due to SCD is highest in the first three years of life. Testing at birth allows the early initiation of therapy which decreases needless death and complications. As Jamaicans, we can be proud; the testing of numerous babies at birth was first done in Jamaica as a part of a research project. Infants in many countriesare tested and start on treatment early.As of 2015, infants born in most hospitals in Jamaica have been tested. This year, all remaining hospitals joined the National SCD Newborn Screening Programme. Pregnant women are also tested for SCD; they are at increased risk compared to other women of dying during and immediately after pregnancy. Women known to have SCD are cared for in special highhigh-risk antenatal clinics to protect them and their babies. At the Sickle Cell Unit, research continues to improve the lives of affected persons. Several projects are underway. One seeks to improve the use of hydroxyurea, a medication known to decrease the risk of strokes in children. Another is testing a possible cure for the disease. Protected: Persons with SCD have increased risk of severe complications of COVID-19 so we encourage all affected persons to minimise exposure. Remote tele-visits have successfully replaced face-to-face visits, when possible. Additionally, the Ministry of Health and Wellness has added a critical vaccinetothose that they provide free of cost to children with SCD.The vaccine improves protection against a serious bacterium called Pneumococcus. Proud: We recognise the Jamaicans living with SCD who keep going regardless of the complications, especially severe pain.The disease is very variable. Some persons have few complications, and infrequently. Others may have jaundice, anemia, leg ulcers and other visible signs of their disease. Some may miss school or work and have to work harder to catch up.Some face stigma and discrimination because of their disease. Nevertheless, many live productive lives, contributing positively to Jamaica’s progress. We thank their families, friends, colleagues, teachers, healthcare providers, advocates and other cheerleaders who support them in the journey. We invite you to join with us in calling out and fighting against stigma against people with SCD and at the same time to celebrate and support Jamaicans affected by this disorder as they contribute to building our society. Professor Jennifer Knight-Madden Director, Sickle Cell Unit, the Caribbean Institute for Health Research, The University of the West Indies.