Call for ‘patient centricity’ with World Primary Immunodeficiency Week
Affecting six million people worldwide, there are more than 320 forms of Primary Immunodeficiency (PI or PID), ranging widely in severity.
WORLD Primary Immunodeficiency (PI) Week from 22 to 29 April is a global movement that aims to raise awareness of primary immunodeficiency disease (PID) challenges, early diagnosis and access to treatment. The Allergy Foundation of South Africa (AFSA), The Allergy Society of South Africa (ALLSA) and the Primary Immunodeficiency Network of South Africa (PINSA) supports awareness efforts alongside several international organisations.
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Professor André van Niekerk, paediatric pulmonologist and chairman of the Allergy Society of South Africa, said PI is when a defect in the immune system is inherited and PID are the rare diseases which occur when a person’s immune system is absent or does not function properly.
“Conditions often go under-diagnosed and children and adults who fall ill with recurrent, unusual, or more severe infections may suffer from a primary immunodeficiency disease.”
University of Cape Town clinical immunologist Professor Jonny Peter said: “Genetic diagnosis, antibody replacement therapy and even bone marrow transplantation are all available in South Africa, but cost and access are the problem. Dedicated efforts by healthcare providers and patient advocates are essential to ensure that all affected patients access the diagnosis and treatment tools that they require.”
Affecting six million people worldwide, there are over 320 forms of PID which often present in the form of ‘common’ infections, sometimes leading physicians to treat the infections while missing the underlying cause. This means that infections reoccur, leaving the patient vulnerable to vital organ damage, physical disability, and even death. Each individual requires a personalised approach, focused on their specific needs.
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The primary immunodeficiency community including patients, their families, healthcare professionals, scientific experts, companies, policy-makers and researchers across the globe are advocating for a political, societal and healthcare shift towards ‘patient-centricity’, working in a holistic, inclusive way with the multiple actors who play a role in care delivery, from patients and doctors, to allied healthcare professionals, biologists and researchers.
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