Individuals affected by thalassemia have to confront inadequacies of healthcare access and support on a daily basis due to the chronic, complex, and highly demanding nature of their illness.1 The COVID-19 pandemic has magnified these challenges and made patients’ lives more vulnerable.2
Thalassemias can lead to a variety of health problems associated with significant burden, multisystemic involvement, and the need for intensive, life-long therapy and follow-up.1 Hemoglobin disorders as a family, and thalassemias in particular, are characterized by genetic variability, which can lead to extreme clinical outcomes and create considerable challenges in providing effective health care for patients.
The effectiveness of health care services is heterogeneous across the world and is impacted by national health priorities, national economies, healthcare infrastructures, and other factors. However, even when such parameters do not exist, the level of effectiveness may be negatively affected by the rarity of hemoglobin disorders among the indigenous population of a country.
Global Burden of Thalassemias, Other Hemoglobinopathies
Hemoglobinopathies are most prevalent in populations in the Southern Mediterranean, Middle East, Southeast Asia, and Africa. However, hemoglobinopathies are gradually becoming a serious global public health, social, and economic concern because of increasing international migration movements.
It has been estimated that 5% to 7% of the world’s population carries a mutated gene affecting the production or function of the hemoglobin molecule.3 Gross estimations demonstrate that more than 330,000 infants are born with hemoglobin disorders each year, of which 83% are sickle cell disorders and 17% thalassemias.
Even based on these numbers, thalassemia and other hemoglobin disorders constitute a major medical, public health, social, and economic problem in more than 70% of the countries that contribute to nearly 90% of the global annual births.
Nevertheless, the Thalassaemia International Federation (TIF) and the majority of the academic and medical community working in the field believe that these numbers are grossly underestimated, due to the absence of national registries across the world and updated epidemiological work in large populations with medium and high disease prevalence.