ANNOUNCEMENT
Development of Primary Immunodeficiencies in Africa
A. A. Bousfiha
1&L. Jeddane
1&N. Erwa
1&T. N. Dieye
1&F. Mellouli
1&S. M. Reda
1&M. Esser
1&R. Boukari
1Published online: 29 April 2015
#Springer Science+Business Media New York 2015
Primary Immunodeficiencies (PIDs) are a large group of dis- eases affecting the immune system, predisposing the affected individuals to a large spectrum of infections. However, PIDs meet very little or no interest by Health Authorities, especially in African countries, as they are considered rare. However, recent studies showed that PIDs are globally more common than we thought, probably affecting more than six million people worldwide [1].
Moreover, as lack of awareness leads to underdiagnosis, it is highly probable that PIDs play an underestimated role in infant mortality and morbidity related to infectious diseases.
In Africa, one of the most populous continents facing major challenges of infectious epidemics, PID diagnosis is especial- ly low. However, the creation of the African Society for Immunodeficiencies (ASID) in 2008 in Casablanca, has led to important improvements in the diagnosis and management of PID patients in Africa.
Epidemiology
Africa is a densely inhabited continent with more than one billion inhabitants spread over an area of about 30 million square kilometers. It has 54 countries subdivided into 5 re- gions: Northern, Western, Central, Southern and Eastern Africa. The population is generally young with 40 % under the age of 15 years, representing around 450 million inhabi- tants. Moreover, the average inbreeding, a risk factor for
emergence of rare autosomal recessive disorders, is around 35.4 % in some African regions.
Based on prevalence drawn from epidemiological studies, it was previously estimated that 988,000 people suffer from PIDs in Africa. However, currently, barely 2500 patients have been diagnosed. If all African PID prevalence was reported as recorded by that of the most actively documenting African country (i.e. Tunisia with a prevalence of 5.71/100,000 inhab- itants), there should be at least 65,000 PID patients diagnosed.
Nevertheless, there has been steady improvement in PID diagnosis in Africa in the last 5 years, as shown in Fig.
1.There has been a 350 % increase recorded for reported cases (registries, articles [2,
3], personal communications) in the2012–2015 period, compared to the 2007–2009 period.
Even more impressive in the JMF survey, there has been an 800 % increase [4,
5]. However, this improvement was typi-cally seen in countries where awareness programs were con- ducted, such as Tunisia, Morocco (300 % each), South Africa (200 %), Egypt (340 %) and Algeria (800 % increase).
Awareness and Training Programs in Africa
To improve the diagnosis and management of PID patients in Africa, awareness and training programs were needed. This was already proven by the results of actions lead by national patient associations and scientific societies.
In Morocco, a patient association was created in 2000: the HAJAR association
www.hajar-maroc.org. This associationdeveloped awareness programs first designed for physicians and young residents, then subsequently for the general public in Morocco, the Arab world and Africa. These actions led to higher diagnosis rates throughout the years. Later, HAJAR association supervised the creation of a scientific society for the establishment of a medical network and training programs.
HAJAR association was also at the origin of the creation of
* A. A. Bousfiha profbousfiha@gmail.com
1 ASID: African Society for Immunodeficiencies, http://www.asid.ma
J Clin Immunol (2015) 35:329–330 DOI 10.1007/s10875-015-0162-4
ASID by organizing in 2008 an international congress, which gathered all the PID experts in Africa at this time.
Since then, ASID has organized several events and created specific activities designed for the development of PID diag- nosis and management in Africa. Since 2008, ASID organizes a biennial African congress (Morocco, Tunisia, South Africa), which is an occasion for healthcare providers to be updated on the recent advances in the field. The 4th ASID congress is scheduled in May 29–31, in Algiers.
ASID organizes once to twice a year a PID School in dif- ferent regions of Africa to train young physicians interested in the field. However, as such events are frequently difficult and costly to attend by physicians outside the host country, ASID created the A-project. The A-project, which began in 2014, is
“one-day training in one African country with one African
expert” where only a few or no cases of PID are reported. A trainer designated by ASID joins the local organizers to ani- mate a 1-day seminar with theoretical topics in the morning and a workshop in the afternoon. To better improve PID diag- nosis, this project has included in 2015 a new concept or goal to combine clinical aspects to biological aspects of PID (Biol A-project). This project aims to raise awareness amongst healthcare providers in the hosting country and train them to diagnose a PID. A local patient support group is also founded and a basic database for recording of PID cases is encouraged.
So far, eight A-projects have already been conducted, five in French and three in English (Benin, Sudan, Gabon, Zambia, Senegal, Cameroun, Ethiopia and Mauritania). Four other A- projects are already scheduled.
Last year, ASID created its own newsletter. This on- line quarterly e-Letter aims to raise awareness further and encourages scientific and social events related to PID. In each issue, a mini-review, two case reports, a list of publications, as well as a report of past events and agendas are published.
Finally, ASID is working towards the establishment of an African patient registry, which may interface with other inter- national registries at a later stage. To begin with, some
regional registries have been initiated, such as the North African Registry, the West African Registry and the South African National Registry.
References
1. Bousfiha AA, Jeddane L, Ailal F, Benhsaien I, Mahlaoui N, Casanova JL, et al. Primary immunodeficiency diseases worldwide: more com- mon than generally thought. J Clin Immunol. 2013;33(1):1–7.
2. Bousfiha AA, Jeddane L, El Hafidi N, Benajiba N, Rada N, El Bakkouri J, et al. Moroccan Society for Primary Immunodeficiencies (MSPID).
First report on the Moroccan registry of primary immunodeficiencies:
15 years of experience (1998–2012). J Clin Immunol. 2014;34(4):459–
68.
3. Barbouche MR, Galal N, Ben-Mustapha I, Jeddane L, Mellouli F, Ailal F, et al. Primary immunodeficiencies in highly consanguineous North African populations. Ann N Y Acad Sci. 2011;1238:42–52.
4. Modell F, Puente D, Modell V. From genotype to phenotype.
Further studies measuring the impact of a Physician Education and Public Awareness Campaign on early diagnosis and management of primary immunodeficiencies. Immunol Res. 2009;44(1–3):132–49.
5. Modell V, Knaus M, Modell F, Roifman C, Orange J, Notarangelo LD. Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery. Immunol Res. 2014;60(1):132–44.
0 500 1000 1500 2000 2500 3000
Reported JMF survey
Number of paents
2007-2009 2012-2015
Fig. 1 Evolution of PID diagnosis in Africa since the creation of ASID in 2008
330 J Clin Immunol (2015) 35:329–330
