Assessing Disability in Thalassaemia: A Position Statement by the Thalassaemia International Federation

Abstract

Thalassemia is not currently conceived per se as a disability, but it can be a disability-inducing condition if poorly treated or as complications increase with age. People living with thalassemia do not wish, on the one hand, to be considered disabled persons to avoid stigma and loss of opportunities to achieve social inclusion in all paths of life while, on the other, they are in need of lifelong appropriate, disease-specific health and social care, including disability allowances and schemes, in order to be able to smoothly integrate into society and achieve professional, educational, personal, and social goals. The ongoing debate on whether thalassemia is a disability or not is thus complex and inconclusive and has created a vast heterogeneity of policies and approaches across the globe. Given that the risk to develop disabilities is subject to individualised assessment, the thalassemia International Federation (TIF) proposes a specific disability risk assessment model for thalassaemia (DRAM-Thal), based on the findings of a targeted literature review and of the TIF survey 2022–2023. This model considers both clinical features and social parameters and is addressed to national healthcare and social services and all other relevant stakeholders. At the same time, this work prompts further research on this understudied topic that heavily affects the rights and daily life of people living with the disease.