What is the International Thalassaemia Day?
The International Thalassaemia Day, 8 May, is a global awareness day which tries to increase awareness about thalassaemia and help patients lead a normal life despite the burden of their disease.
Every year since 1994, the Thalassaemia International Federation (TIF) is organising many diverse activities for the International Thalassaemia Day, with the objective to:
- draw the attention of general public, patient associations, public authorities,
healthcare professionals, and industry representatives,
- fuel discussions and promote action on a particular theme
related to the prevention, management or treatment of the disease
in a patient-centred manner.
What is the ITD 2021 theme and why was it selected?
Addressing Health Inequalities Across the Global Thalassaemia Community
Over the last 30 years there have been striking scientific advances in the prevention and management of thalassaemia, which have resulted in impressive increase of survival and improvements of the quality of life of patients with these disorders. These, however, have been adopted and implemented only by very few countries across the world, mainly in geographic regions with historically high disease prevalence, either in the indigenous populations, such as the countries of the Southern Mediterranean (mainly Cyprus, Italy, Greece), or in their long-term immigrant populations, e.g the UK. In many other mainly developing, low- and middle-income, countries people affected by thalassaemia sadly continue to encounter pronounced challenges in terms of access even to basic health, social and other care.
The truth is that today many patients with thalassaemia are still fighting for:
- sufficient, safe and appropriately processed blood
- uninterrupted, safe and appropriate iron chelation therapy
- specialized monitoring for iron load to prevent organ damage
- adherence to international guidelines
- receipt of care by a multidisciplinary care in a reference centre with expert medical specialists
- social and professional integration, without being subject to health-related stigma and marginalisation
Published evidence and TIF-collected data suggest that a big percentage of patients with thalassaemia residing in these countries, face an increased risk of morbidity and mortality at a young age, as a result of the suboptimal care they receive.
Countries have developed or are in the process of developing a number of general disease-specific health and social policies. However, these are of variable success and effectiveness and are heterogeneously adopted and implemented, even within and/or across a country, within and/or across a region, resulting in a vast inequity of access of patients to appropriate and effective care. The many and multiple unmet needs of patients with thalassaemia across the world, coupled with the tragic COVID-19 pandemic consequences, have magnified health inequalities, delaying and jeopardizing the promotion of the United Nation’s Sustainable Development Goals (SDGs), including the transition of all health systems to universal coverage.
Therefore, there is a substantial need for a greater focus by all stakeholders, including National Thalassaemia Associations, to address and reduce both existing and emerging inequalities which are nowadays further escalated by the ongoing coronavirus pandemic.
The International Thalassaemia Day is a day when we need to unite our voices together as ONE! It is a day for us all to remember those whom we have lost, and in their honour, fight for our human rights! Eliminating health inequalities, so that patients with thalassaemia receive the same quality of care wherever they may live and enjoy a full social and professional life is our collective responsibility!
Join forces with TIF, under this years’ International Thalassaemia Day theme, to highlight the huge and heterogeneous inequalities faced by patients globally as demonstrated by the Federation’s Global Thalassaemia Review, which documents the current state of healthcare services provided to patients with thalassaemia across the world and from which emerges a picture of significant disease burden and unmet needs!
When and how was the International Thalassaemia Day established?
The 8th of May was established as International Thalassaemia Day in 1994 by the Thalassaemia International Federation, in loving memory of George Englezos, the son of TIF’s President and Founder, Mr. Panos Englezos, and all individuals with thalassaemia who are no longer with us.
Social prejudice had already started to fade when George and other patients with thalassaemia began to succeed in the professional arena and have their own families.
George and other patients’ success was due to their own personal fight for personal and social achievement, but also to the ceaseless fight of their parents who, not only confronted the social stigma that accompanied genetic conditions such as thalassaemia at the time, but also participated in and strengthened Anaemia Associations. The latter, with the help of a small group of doctors and nurses, worked altruistically to raise social and state awareness about to this condition and the needs of thalassaemia patients.