Roberval Tavares
Ashoka Fellow since 2003   |   Nigeria

Peter Azolibe

Projects Development for Children Survival (PRODECS)
Peter Azolibe is reducing the incidence of avoidable genetic diseases, primarily sickle cell anemia, by testing and educating rural communities on genotypes and prevention.
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This description of Peter Azolibe's work was prepared when Peter Azolibe was elected to the Ashoka Fellowship in 2003.

Introduction

Peter Azolibe is reducing the incidence of avoidable genetic diseases, primarily sickle cell anemia, by testing and educating rural communities on genotypes and prevention.

The New Idea

Peter believes that sickle cell anemia, a genetic disease, can be prevented and eventually eradicated if information on the disease is provided to people before they choose life partners. While information on sickle cell anemia was generally available in Nigeria in the 1970s, there has been little concerted effort over the last two decades to build public awareness. Peter has created a model for reducing the prevalence of preventable genetic diseases by comprehensively educating people about sickle cell anemia, testing them for the disease, and making them aware of the risk of sickle cell offspring when individuals with particular genotypes have children. While most health prevention programs only disseminate information, hoping that people will then act on their own, Peter combines both information and testing. With this approach, people in the remote rural communities where he works do not have to travel long distances to hospitals or clinics to undergo the tests.
Peter also provides those tested with a small card indicating their blood group and type. These cards, which are printed with their owners' photos and names, have proved useful in the case of accidents and other emergencies. Furthermore, for many rural dwellers, this card is their only form of identification and has helped them in dealing with law enforcement agents.

The Problem

In Nigeria an estimated 5 percent of the population–or two million people–have preventable genetic diseases, the most predominant of which is sickle cell anemia. Sickle cell anemia is an incurable genetic condition in which the oxygen-carrying capacity of sickle cell hemoglobin is very low. At low oxygen tension, the patient experiences fever, elongated and swollen limbs, protruded abdomen, tower skull, enlarged spleen and liver, jaundice, and hemolytic anemia. The condition is passed from parents whose genotypes are both AS or AS/SS to their children, who are born with the SS genotype that leads to sickle cell anemia.
If a person has the AS or SS genotype, the risk of having children with sickle cell anemia can be eliminated simply by avoiding partners with these genotypes. However, in Nigeria, few people, especially in the rural areas, have this information and thus continue to produce offspring with the disease. Furthermore, the preponderance of superstitions makes it difficult for people even to seek medical advice when their child has the condition; it is traditionally believed that such children are "spirit children" sent to the world to torment their parents. Hence, without adequate information, people with these genotypes will unknowingly continue to procreate with one another, and the number of people with sickle cell anemia will more than double, as it has already done between 1970 and 2000.
In the 1970s, the Nigerian government provided a lot of information on sickle cell anemia both to enlighten people on the condition and to help stem the spread of the disease. However, since the economic downturn of the 1980s, the government has provided little official information. All attention is focused on eradicating of HIV/AIDS, leaving other serious health problems unaddressed. At the present time, there are sickle cell clubs around the country, but these are associations of people with sickle cell anemia who come together to share experiences about the disease. They distributed very little information–only to those who come to the club. Another institution, the Sickle Cell Foundation, concentrates on research to find a cure for the disease.
Because sickle cell anemia is such an expensive disease, many people who have children that suffer from it become impoverished trying to provide care, and their children rarely ever live beyond 21 years.

The Strategy

Having observed an increase in the number of people with sickle cell anemia, and given the sparse information provided by the government and citizen organizations on how to halt this disease, Peter decided to start providing information and care to rural communities. Peter's initiative began in 1991 when he established a laboratory in Anambra State to test for various health conditions. He soon realized from routine tests that many people were coming in with sickle cell anemia, and he started to educate them on the causes and prevention of the condition. It became obvious to him that to eradicate this problem he had to provide preventive education to the community at large with the aim of reaching individuals before they begin to choose life partners.
To do this, Peter goes to schools, churches, and villages to disseminate information. Working with him are 17 full-time staff, 6 resource persons and over 1,000 male and female volunteers. After providing information on sickle cell anemia, he tests those who are present so that they can know their genotype. Funds from the testing are used to cover overhead costs for his information campaign. In addition, affluent community members help sponsor the advocacy program and pay for lower-income members to conduct the test.
Peter also provides those tested with a small blood group and blood type card, with their photos and names on it, which they can pin to themselves or carry in their pockets. These cards have proved useful not only in reminding individuals of their genotype but also in providing necessary identification and medical information in the case of accidents and other emergencies.
Peter has written a book and appeared in various radio programs to spread the message. Through his initiative, which started five years ago, he has been able to visit over 1,000 schools, churches, and villages and reached over a million people through the radio. As a result of his advocacy on the issue, all churches in the communities with which he works now require intended couples to do genotype tests, and they also provide counseling to their congregations to increase knowledge of reproduction risks due to genetic incompatibility.
Understanding that his team, though substantial, cannot alone disseminate this information and halt the problem, he is engaging the help of the government of Anambra State to help educate the populous statewide. He is also soliciting the support of neighboring state governments and international agencies to help in disseminating information and training laboratory personnel to conduct the tests.

The Person

Orphaned in his early teens, Peter was forced to begin fending for himself at an early age. With the support of relatives and friends, Peter managed to attend secondary school and university, where he studied medical laboratory sciences.
Prior to this, he had always demonstrated leadership qualities. In primary school, Peter was an altar boy, a position reserved for the best students in school. In secondary school, he was made the Chief Disciplinarian. As an adult, between 1994 and 1998, Peter was made the secretary of his village community, and he contributed to initiating various development projects, including road construction, the walling of the village hall, the settlement of protracted land cases, and the provision of a working constitution for the village.
Peter has brought the same zeal and enthusiasm to his sickle cell anemia initiative and has been able to reach over 500,000 people since starting his program. He is so committed to this idea that he has passed over many offers to set up his laboratory in the city where he could make a significant income as a laboratory scientist for hospitals and clinics.

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