CECFOR (DRC), GEDREPACAM, Centre Pasteur (Cameroon), IMRA (Madagascar)



What is sickle cell disease?

Sickle Cell Disease is the leading genetic illness in the world and particularly affects African populations. It affects the blood and causes intense pain, anemia and an increased risk of infection. In Central Africa and Madagascar, about 20% of the inhabitants are healthy carriers of the Sickle Cell Disease gene and pass it on without knowing. Every year, almost 2% of newborns are affected by the disease and 50 to 75% of them die before they are five if they are not treated.

© 2017 IECD

IECD – © 2017

Affiah is a child with sickle cell disease. Discover her story in the documentary filmed in DRC, the aim of which is to inform local communities about the disease and fight discrimination. A short version aims to encourage public authorities to become more involved in this public health issue.

Improvement of care for people suffering from sickle cell disease (Central Africa and Madagascar)

4 300

people with sickle cell disease treated in 2019

30 000

screening tests performed in 2019

16 000

people informed in 2019

In 2006, the IECD was one of the first international solidarity associations to commit to people suffering from Sickle Cell Disease. In 2014, the program took off with the support of the Pierre Fabre Foundation and is deployed in four countries. Five years later, the program has helped to care for 4,300 patients, train 1,600 healthcare professionals in early screening,  inform 16,000 people, and screen 30,000 people, mainly newborns. In 2019, the Ivory Coast joined the program and trained 24 health workers in managing the disease.

This genetic disease mainly affects very young children. Early diagnosis and care greatly help to improve their life expectancy and living conditions. Whereas in France a person with Sickle Cell Disease has an average life expectancy of 65 years, in  Africa, 3 children out of 4 die before the age of 5 years.

The IECD supports more than 70 healthcare structures in five countries and deploys its program according to the approaches below. With a view to the forthcoming extension of the program, a preliminary study was carried out in Ivory Coast. The first training and screening actions will start there at the end of 2018.

An estimated 500,000 sick children are born every year in the world. In Africa, the disease is relatively unknown and the majority of sufferers do not benefit from the correct care. Worse still, some believe that it is the result of a curse, thus maintaining beliefs that deprive patients of the appropriate care and encouraging discriminatory behavior.

The IECD’s program

The program aims to reduce mortality among children suffering from sicklecell disease and improve their living conditions through support for different healthcare structures on the basis of the following lines:

  • Screening at birth
  • Training of healthcare workers
  • Monitoring and management of people
  • Therapeutic education for parents and awareness raising among the general public
  • Appeal to health authorities to make Sickle Cell Disease a public health issue
  • Strengthening of the Study of Sickle Cell Disease in Central Africa Network (REDAC) in order to promote scientific exchanges and good practices

THE REDAC CONGRESS (Network Study of sickle-cell disease in Central Africa) – 25/27 May 2016 – Kampala (Uganda)

The congress, organized every two years, is becoming increasingly famous: in 2016, it brought together more than 500 participants from 18 countries in Africa, Europe and America. This high attendance bears witness to the importance of sickle cell disease in terms of public health. Apart from sharing experiences, which improves practices when caring for the sick, this international congress offered a great opportunity to discuss the latest research and new therapeutic data. Thanks to the presence of several African health ministers, it was also an opportunity to continue to appeal for more attention from health authorities with regard to the situation of patients.