International Thalassaemia Day 2021: Official Global Press Release

On International Thalassaemia Day, TIF shines a light on the striking health inequalities that affect the global thalassaemia community, further accentuated by the ongoing coronavirus pandemic.

NICOSIA, May 5, 2021/Thalassaemia International Federation (TIF) – Marking International Thalassaemia Day on 8 May, the Thalassaemia International Federation (TIF) gives voice to countless individuals with thalassaemia all over the world who continue to encounter pronounced challenges in terms of access even to basic health, social and other care, necessary for their survival and well-being.

International Thalassaemia Day is devoted to raising awareness amongst the general public and decision-makers about thalassaemia, and helping the global thalassaemia community connect and call for changes towards the improvement of lives of patients with this inherited, debilitating blood disorder.

The 2021 theme ‘Addressing Health Inequalities Across the Global Thalassaemia Community’ was carefully selected to spotlight the many and multifaceted unmet needs of patients with thalassaemia which, coupled with the tragic COVID-19 pandemic consequences, have further exacerbated health inequalities that afflict the global thalassaemia community.

Indeed, published evidence and TIF-collected data suggest that in most countries where thalassaemia exists, patients with β-thalassaemia do not reach or surpass the age of 20 years old, while less than 20% of patients with the disease globally receive appropriate and timely blood transfusions and iron chelation therapy.

‘’Albeit impressive scientific advances in the prevention and management of thalassaemia, leading to improved survival and quality of life of patients, the majority of individuals with the disease, residing mainly in low- and middle-income countries of the world, still face an increased risk of morbidity and mortality at a young age, due to the suboptimal care they receive. Today we call for the intensification of concerted efforts and collective mobilization by all related stakeholders to change that’’, said Dr Androulla Eleftheriou, TIF Executive Director.

‘’The International Thalassaemia Day is a vivid reminder of all the people we have lost along the way towards better prevention and management of the disease, and an opportunity to renew our promise to keep fighting for the benefit of our community, until a final cure for thalassaemia is accessible to every patient’’, added Mr Panos Englezos, TIF President.

In celebration of the International Thalassaemia Day (ITD) 2021 and seeking to highlight the importance of thalassaemia as a worldwide, major public health issue, TIF has prepared a wealth of online activities, which include a massive global campaign featuring various awareness and communication resources, the ITD 2021 Official Video and an online photo exhibition.

In addition, TIF will host a Virtual High-level Event for the official premiere of the ‘Global Thalassaemia Review’, a particularly ambitious work of the Federation, fruit of its official collaboration with the World Health Organisation (WHO), developed with the objective to document and assess the existing services for patients with thalassaemia all over the world.

The event will open a welcome address by WHO Director-General, Dr. Tedros Adhanom Ghebreyesus, whilst high-ranking representatives of international patient organizations, prominent academics and many other internationally renowned figures operating in the haemoglobinopathies field, will also actively participate.

‘’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.’’

VISIT THE DEDICATED ITD 2021 WEBPAGE

ABOUT TIF:

Thalassaemia International Federation (TIF), a non-governmental, patient driven umbrella organisation, established in 1986, supports the rights of patients for access to quality health, social and other care through its work with over 230 national thalassaemia associations in 62 countries across the world. Founded by a small group of doctors and patients/parents who represented National Patient Associations, mainly from Cyprus, Greece, Italy, UK and USA i.e. countries where thalassaemia had been recognized early as a genetic, hereditary disorder with huge medical, public health, social and economic repercussions if left unaddressed in terms of both effective prevention and management.

Our Mission: The prioritisation of thalassaemia on national health agendas and the development and implementation of effective disease- specific control (prevention and clinical management) programmes within national healthcare systems based on universal coverage

Our Vision: To support the provision of equal access of every affected patient to high quality health, social and other care in a truly patient-centred healthcare setting

Our Work: Education | Advocacy | Collaborations/ Networking | Research | Raising Awareness

Our Partners:

• World Health Organisation: In official relations, since 1996
• United Nations Economic and Social Council: In special consultative status, since 2017
• Council of Europe: Participatory status at the Conference of International Non-Governmental Organisations, since 2019
• European Commission: Official partners in the field of Health, since 2018

ABOUT THALASSAEMIA:

The thalassaemia syndromes are inherited blood disorders that affect the production of the normal adult haemoglobin component of red blood cells. Beta thalassaemia is the most frequent and severe form of the disease, leading to the excessive destruction of red blood cells and thus severe chronic haemolytic anaemia.

Affected patients require lifelong regular blood transfusions from early childhood, combined with iron chelation therapy to prevent complications due to iron overload, such as cardiac morbidity, liver disease, cancer and endocrine dysfunction. To effectively manage the complications of the disease, consequent to disease pathology and treatment, the provision of multidisciplinary care is mandatory.

A holistic approach to care also includes social participation and protection that lead to increased quality of life.