Over the past 30 years, Abdoulaye Diaw has built a critical bridge between individuals affected by sickle cell anemia and medical specialists, researchers, and state health authorities in order to mitigate the effects of this incurable disease in Senegal and West Africa.
The New Idea
A pioneer on the issue of sickle cell anemia, Abdoulaye has succeeded in making the illness and its social effects a matter of public health. He has developed a strategy that addresses both the physical and social well-being of those affected. Abdoulaye assists children and their families with free medication and education on preventative measures aimed at lowering hospital costs. Additional medical assistance and follow-up treatment are also provided–services which are often otherwise inaccessible. Abdoulaye has also devoted significant effort to encouraging scientific research on treatment and building awareness about the disease in schools and among the general public. His vision and action have inspired various policies, as well as the creation of several local organizations promoting the fight against sickle cell anemia and its consequences.
Sickle cell anemia, a blood abnormality that makes red blood cells more fragile, is hereditary and irreversible. Red blood cells become deformed and begin destroying themselves, adhering to one another and ultimately blocking circulation of the blood, which becomes less fluid. The disease can be fatal, for example, if a child is not closely monitored. Although the disease is clinically well known among practitioners and specialized centers, the social repercussions of sickle cell anemia have been poorly addressed. There is a lack of effective prevention policies, appropriate treatment options, and affordable medication.
The disease is often identified as an "African illness" as it seems to affect people of African descent the most. It is also common in the Mediterranean basin, the Caribbean islands, and other areas of the Americas, though the repercussions on the African continent tend to be far more deadly. In Senegal, there is no systematic testing and a corresponding lack of proper medical equipment. This allows the illness to spread unabated as unaware carriers receive little counseling and may have sick children. Medical personnel and scientists (hematologists, pediatricians, and related specialists) have failed to disseminate existing information on this illness.
A social consequence of the illness is that it often incapacitates or impedes an affected child's studies. Such a delay compromises and limits students' opportunities for future employment. If unable to complete their studies, children have to rely on low-skilled, physically intensive work that is extremely difficult given their health. Though people who suffer from sickle cell anemia are essentially disabled, the disease is not visible; as such it is perceived to be neither a fundamental public health issue nor a priority for health services in Senegal and several other African countries.
The lifelong duration of sickle cell anemia and the need for costly drugs from pharmaceutical firms means necessary medical treatment is often beyond the reach of individuals and existing financial supports. This situation convinced Abdoulaye in 1984 to develop an organization to assist children with sickle cell anemia in Senegal. The objective was that these children, whatever their social conditions, would never be isolated or left alone with their pain and the difficulty of accessing adequate care. Furthermore, Abdoulaye believed they should be allowed to continue their academics without facing expulsion from schools if they were unable to sit for an exam.
The first step in Abdoulaye's strategy is to help the sick and their families identify and take advantage of daily preventive measures. Such measures can lower the frequency of crises and reduce the duration and cost of hospitalization as well as the various social costs of disruptions in the lives of the patients and their families. Abdoulaye implemented prevention training programs aimed at affected children, their parents, and trainers in charge of the further dissemination of these skills in various locations. He and the members of his organization also counsel parents on vaccinations against infections to which sickle cell anemia sufferers are particularly sensitive.
Facilitating the supply of and access to medicine is another primary objective. By partnering with a number of European organizations in the late 1980s, Abdoulaye benefited from free medicines distributed to dispensaries, high schools, children's hospitals, and pediatric clinics that receive children with sickle cell anemia. To secure a regular, constant supply of medicine and avoid shipping costs and bureaucratic red tape, Abdoulaye obtained free use of the presidential airplane to ship medicine from Europe.
Abdoulaye has inspired individuals and organizations to conduct studies and scientific research that could lead to the confirmation of identified traditional treatments. This encourages pharmacological research pertaining to the potential use of African plants in analgesic markets.
Debunking the myth that sickle cell anemia is a contagious illness that affects a child's intelligence is another aspect of Abdoulaye's work. He and his organization undertook an initiative aimed at providing the general public with facts about the nature of the illness and its mode of transmission. This was done through the distribution of informative pamphlets and other literature, particularly in schools and universities. They are also striving to provide genetic counseling to pregnant women with sickle cell anemia and health counseling to sick children and adults on the risk of crises triggered by malarial infections.
Additionally, Abdoulaye strives to improve the health conditions and academic performance of high-school students suffering from sickle cell anemia. With Abdoulaye's help, the educational system has become more sensitive to the constraints faced by the over 50,000 primary and secondary school students suffering from sickle cell anemia. He secured academic stipends for all of them, made it possible to obtain medical releases exempting them from physical education requirements, introduced the possibility of repeating a class missed because of illness, and established a norm of placing sick students in schools close to their homes. In March 1986, the Ministry of Education extended similar measures to ensure that the interests of university students suffering from sickle cell anemia are taken into account.
The activities of Abdoulaye and his organization have inspired the creation of numerous similar organizations and programs in the region, many of which are well known in France, Benin, Togo, and other African countries. His ideas and strategies regarding the structure of outpatient services have been implemented in Côte d'Ivoire. In the past, Abdoulaye has collaborated in an ongoing manner with several associations–exchanging ideas, experiences, and information on measures taken with public authorities regarding sickle cell anemia sufferers.
Throughout his life, particularly during his youthful involvement in the struggle for labor and political freedoms, Abdoulaye fought for grand ideas on the transformation of society. Thirty years ago, he decided to devote himself to "something more precise and less grandiose," he says. He changed focus and began fighting against the effects of sickle cell anemia.
In the 1960s, Abdoulaye tested positive as a sickle cell carrier during a routine health examination in France. Having never heard of the illness, he did not take it seriously until it affected some of his children. He then realized that both he and his wife were carriers and had transmitted the blood abnormality to their children, some of whom developed the disease.
Even while working as a high-ranking official in the Customs Service and Supreme Court of Senegal, Abdoulaye devoted time and resources to assess the situation of children with sickle cell anemia. In the 25 years since his retirement, he has continued to devote himself tirelessly to this work.
Abdoulaye has participated in various international conferences and workshops, often organizing meetings in his own house, making his home well known to many people suffering from sickle cell anemia. As a leading pioneer, advocate and practitioner, he has been invited to medical seminars and conferences hosted by renowned organizations that cater to medical specialists, pediatricians, and hematologists.
Now 82-years-old, Abdoulaye is imparting upon the next generation his experiences so that the work that has been done can be preserved and integrated with new and future developments in research, therapies, and other strategies.