Saving Sickle Cell Lives

Our Story

Saving Lives of Children with Sickle Cell Anemia in Haiti

The Need

Sickle cell anemia is a chronic blood disease that affects people of African descent and Latinos. It is a congenital condition (people are born with it). Sickle cell anemia (also called sickle cell disease) gives many complications including recurrent pain and risk of infections. We have about 100,000 people living with sickle cell disease in the United States. The way to diagnose sickle cell disease is by doing a blood test. Newborn screening is an excellent way of making the diagnosis. In the United States, newborn screening is done routinely since the 1980’s.

The University of Miami Miller School of Medicine Sickle Cell Center is the main center in South Florida for the care of children and adults for sickle cell disease. We serve a large patient population of individuals with sickle cell disease, offering comprehensive clinical care, outstanding cutting-edge clinical research, and playing a role in patient advocacy.

The University of Miami Pediatric Sickle Cell Program is trying to help Haiti because sickle cell disease affects Haitians too. Currently, there is no large sustainable programs for newborn screening in Haiti. Haiti has a population of over 10 million people, the vast majority of whom are descendants of people from West Africa. It is the poorest nation in the Western Hemisphere, with an adjusted net annual per capita income of $781. One in 13 Haitian children dies before their fifth birthday. The death risk is much higher for children who are born with sickle cell disease if they are not identified by newborn screening. It is estimated that about 1,600 children are born every year with this disease in Haiti. Not many of them will survive early childhood unless they are diagnosed and treated.

The Opportunity
The way we are able to help children born with sickle cell disease is by diagnosing them early at the time of newborn screening. These children should be treated with penicillin and receive childhood immunizations including Prevnar 13 to prevent Strep pneumonia infection. Currently, many families in Haiti cannot afford Prevnar 13 which costs over $100 American dollars.

We began a Newborn Screening Program in Haiti in August 2017. Our Newborn Screening Program is located at the Hospital Universitaire Justinien in Cap Haitien. We diagnose children with sickle cell disease and pay for penicillin, Prevnar 13 and the necessary medical follow up. Without your help, it will be difficult to continue our mission.

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