The government remains committed to collaborative action in the fight against thalassemia, said Minister of Health Michael Damianos, during his address at the 1st Regional Pan-Arab Summit on Thalassemia and other hemoglobin diseases, organised by the International Thalassemia Federation and the Pan-Arab Thalassemia Associations Forum on Monday in Nicosia.

Damianos also announced the government’s intention to formalise its relations with the Thalassemia International Federation through the signing of a Memorandum of Friendship between the Ministry of Health and the Federation.

According to the Health Minister, thalassemia has been endemic in Cyprus for centuries, with the island having one of the highest rates of carriers and affected individuals in the world, while as early as the 1960s, this severe form of anaemia was observed in many children in Cyprus, but was of unknown origin, cause and clinical outcome, and had at the same time severe medical, social and economic repercussions.

As a result of the extensive collaborative efforts of the government, patients, families, treating doctors and the church, Cyprus managed to successfully address the multifaceted challenges posed by thalassemia, transforming it from being a medical, social and economic burden into a manageable condition, Damianos said.

He added that the country is now spearheading actions aiming at improving the quality of life of patients, including through the establishment of the first globally National Thalassemia Committee and the adoption of a national thalassemia strategy focusing on achieving further progress in the screening, prevention and management of thalassemia, including the provision of genetic counselling, prenatal screening and advanced mental care to affected individuals.

He also said that the National Thalassemia Committee, initially chaired by the President of the Thalassemia International Federation, Panos Englezos, and now by TFI Executive Director, Dr. Androulla Eleftheriou, is the official multistakeholder consulting body of the Ministry in all matters related to thalassemia, while noting that Cyprus’ leadership in the field of thalassemia could have never taken shape without the contribution of the Thalassemia International Federation, “the only international patient-led organisation having its headquarters in Cyprus, in recognition of the country’s efforts to control the disease and its location in the very middle of the so-called thalassemia belt that includes areas of sub-Saharan Africa, the Mediterranean, the Middle East and Southeast Asia”.

The Minister then commended the federation for its commitment to the global fight against thalassemia through its extensive network of 240 member organisations, spanning more than sixty countries across all the regions of the world, having played a pivotal role in the diagnosis and treatment of thalassemia globally.

TIF’s efforts and actions in advocating for policies and initiatives aimed at enhancing preventive measures and improving the quality of care for individuals affected by thalassemia and other haemoglobin disorders have been instrumental in improving the length and quality of life of patients around the world, continued Damianos, adding that since 1996 when TIF started cooperating officially with the World Health Organisation, it has managed to maximise the visibility of thalassemia, provide guidance to affected countries and training opportunities to healthcare professionals, and most importantly, empower people with thalassemia globally to fight for their right to quality healthcare, social and other support.

He added that a milestone of this collaboration has been TIF’s Global Thalassemia review, first published in 2021, which outlines the global thalassemia landscape and highlights all existing inequalities, while also demonstrating the significant steps taken by many countries to a greater or lesser extent based on national needs, resources and health priorities to address the multifaceted challenges of thalassemia and to alleviate the burden of the disease on the national healthcare system, the society, as well as individuals and families.

The Minister of Health subsequently congratulated the Pan-Arab Thalassemia Associations Forum for organising this important meeting and creating the context for TIF’s efforts to fight against health inequalities in the Arab-speaking countries, linked to Cyprus with a permanent bond of friendship, while also taking note of the patients’ needs and taking decisive steps towards service improvement in the development of national programmes and for thalassemia control and management in their respective countries.

He also expressed his satisfaction for the fact that the headquarters of the Thalassemia International Federation are located in Cyprus, serving “as a beacon of hope and the centre for global collaboration in the fight against thalassemia” and announced the government’s intention to formalise its relations with the Thalassemia International Federation through the signing of a Memorandum of Friendship between the Ministry of Health and the Federation, further strengthening their partnership in this vital course.

Concluding, Damianos reaffirmed the government’s commitment to collaborative action in the fight against thalassemia. “Together, we can ensure a brighter future for individuals and families affected by this condition”, he said.

In his address, Ali Taher, Professor of Medicine, Hematology and Oncology at the American University of Beirut, said that almost all Arab countries have developed important services and have focused their attention on setting policies and addressing effectively hemoglobin disorders since the 1960s, following, particularly, the example of Cyprus, a country in the neighbourhood with which they maintain good political relations.

He added that enduring unmet patient needs, which became further exacerbated during the COVID-19 pandemic, thus leading to health inequities and disparities, have necessitated the establishment of an alliance network by the Thalassemia International Federation, which aims not only at enhancing specific policies and programmes, but also to strengthen the voices and positions of all stakeholders within the field of healthcare.

“Armed with cultural insights and deeper understanding of our region alongside the TIF support and intense advocacy, I am confident that substantial strides can be made and that we would be able to change the landscape and the management of patients in our region,” he noted.

For her part, WHO Regional Director for Eastern Mediterranean, Dr. Hanan Balkhy said in a recorded message that the organisation has identified thalassemia as the most common genetic blood disorder in over 60 countries, causing severe anemia and leading to death if left untreated.

She added that in the Eastern Mediterranean region, thalassemia carriers are highly prevalent in subpopulations of certain countries, partly owing to consanguineous marriage, adding that though advances in therapy have made the disease more treatable, its management remains costly and that the most cost-effective measure is prevention, which involves premarital screening, prenatal diagnosis, genetic counselling, and education.

Given that the primary treatment is blood, efforts should be made to improve blood donor management practices, which are still a challenge in the region, continued Dr Balkhy, adding that other challenges are related to the lack of medications and relevant workforce, especially in countries suffering from conflicts and other emergencies.

“This is why one of my main flagship initiatives as new Regional Director focuses on improving access to medical products, particularly during emergency situations and conflicts, where access to safe blood products is crucial and lifesaving. We are currently facing these dire needs in Gaza, where we have around 300 patients with no access to any treatment, and in Sudan, which today suffers from the largest internal displacement crisis in the world”, she noted in that regard.

“WHO remains devoted to supporting thalassemia patients in accessing their required care. I call on all Member States and partners to join efforts to support the needs of thalassemia patients in Gaza to alleviate their suffering during the ongoing war, as well as everywhere in the region and the world”, concluded the WHO official.

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