Primary Immunodeficiencies in Africa: Improve Diagnosis and Treatment for Patients

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600.000 people in Africa have their lives heavily impacted by these chronic conditions.
99% remain undiagnosed and untreated though treatments exist.

Primary Immunodeficiencies (PID) are a group of genetic disorders caused when the immune system does not work properly. PIDs are life threatening conditions that lead to severe infections and high rate of mortality when not diagnosed and treated properly. Considering the prevalence of those conditions, around 600.000 people in Africa have their lives impacted by these chronic conditions. 99,5% remain undiagnosed and untreated.

With an appropriate treatment PID patients will be able to lead normal and productive lives. Improved diagnosis of PIDs and provision of optimal treatments will have a positive impact on healthcare budgets.

The African Society for PID (ASID) and the International Patient organisation for PID (IPOPI) call upon African healthcare policy makers to join them in taking strong and decisive action to ensure that people with PIDs are diagnosed as early as possible and have appropriate access to safe, efficient life-saving treatments and optimum care.

National governments and health departments in Africa should implement health policies that provide an appropriate framework for the care of PID patients that incorporate these five expert recommendations[1]. 

1.    Early diagnosis:
• Support should be made available to African healthcare providers to facilitate the early diagnosis of PIDs thereby preventing complications, repeated hospitalisations and decreasing mortality rates.

• Provision of basic PID blood tests should be made available as a first step. PID genetic diagnostics should be further developed and made accessible across the region as a second step. Newborn screening should be considered for severe PIDs such as Severe Combined Immunodeficiency (SCID) as a disease prevention programme.

2.    Treatment:
• Immunoglobulin (IG) replacement therapies -which are recognized as essential medicines both for children[2] and for adults[3] by the World Health Organisation (WHO)- Antibiotic, anti-fungal prophylaxis are key in preventing infections in those conditions. Platforms for Hematopoietic stem cell transplantation should be made available to PID patients and prioritised in healthcare budgets across Africa.

• Strategies should be envisaged to ensure an optimal supply of these life-saving therapies.

3.    Education
• Educational efforts should be put into place to increase the expertise on PIDs in the African continent, with the inclusion of PIDs in the MD curriculum as an emerging and increasingly important field of clinical medicine.

• Continuing medical education should also be required for physicians practicing in primary care settings and hospitals. 

4.    PID Registries
• National PID registries should be implemented in all African countries, in cooperation with the international registry. National registries are important tools for assessing the prevalence as well as the incidence of PIDs, detecting areas of low diagnosis rates and providing data to support research in the field. It also provides valuable information to governments to aid planning of educational programmes and allocation of treatments for patients in need.

5.    Specialized Treatment Centres
• National or regional specialized treatment centers should be implemented to enable equitable geographical access for patients to medical and nursing expertise in these diseases. 

ASID and IPOPI can offer further help and expertise in support of the above mentionned recommendations and engage into a constructive partnership with African health authorities.

[1] From PID Principles of care