Impact of COVID-19 pandemic on rare diseases- A case study on thalassaemia patients in Bangladesh

Hossain, M. S.; Runa, F.; Mosabbir, A. A.

Objectives Thalassaemia is a life-threatening rare disease, which requires regular blood transfusion and medical care. The information on how thalassaemia patients are affected during the unprecedented COVID-19 crisis is scarce. This study aimed to assess the impact of the COVID-19 pandemic on the blood transfusion and healthcare access of thalassaemia patients at the community level in Bangladesh. Methods A cross-sectional study was conducted among thalassaemia patients registered in a community-based thalassaemia registry in Jamapur, Bangladesh. Results As compared to pre-COVID-19 time, the number of blood transfusions among patients under the thalassaemia registry was significantly reduced during COVID-19 pandemic (190 units versus 81 units). In addition, the median number of red cell transfusions per patient was dropped significantly from 4 units to one unit. Over 80% of patient had no access to healthcare services at all during the early phase of the pandemic. Conclusion Emergency response with appropriate mitigative measures must be a priority for addressing an acute shortage of blood supply in situations like COVID-19 pandemic.