The steady increase in the number of thalassaemia patients and carriers in Europe, as well as the challenges this poses both for the health systems of EU countries and for the optimal care of those suffering from the disease, was highlighted at the press conference to announce the findings of the International Thalassaemia Federation's (IOF) "Thalassaemia in Action" project, which took place on Monday at the Federation's offices in Nicosia.
The TIF's four-year programme of activities (2018-21) "Thalassaemia In Action" (THALassaemia In Action - THALIA) was co-funded by the Third Health Programme of the European Commission's Consumer, Health and Food Executive Agency (CHAFEA).
The Head of the EU Delegation in Cyprus, Myrto Zabarta, in her welcome address said, among other things, that the steady increase in the number of patients and carriers with thalassaemia in the European territory, as a consequence of increased migration flows from high prevalence countries in recent years, made more evident than ever the need for constant vigilance and preparation of European Member States for the proper and timely management of haemoglobinopathies.
"The determination to ensure that all patients, without exception, have access to the best possible knowledge, diagnosis and treatment is at the heart of our efforts and we will not stop until we achieve it. And to do this, to ensure that the voice and needs of the patient community are heard and fully addressed, all stakeholders, including the scientific community, patient representatives and health policy makers, must join forces, work together and ensure that research, policy and the unmet needs of patients are combined to define appropriate treatment pathways," he added.
He said the pandemic has shown us that we can tackle a risk to our health, but it has also shown us that no country and no government can do it alone.
"So we are determined to deal with emergencies such as the pandemic, but it is equally urgent for the European Union to address the long-term challenges," he said.
The President of the International Thalassaemia Federation, Panos Englezos, said in his address that THALIA is not just a project co-funded by the European Commission, but the strategic cooperation agreement between the Commission and the Federation for the period 2018-2021.
"THALIA started with an eye on recent and past migratory flows from countries with a high incidence of thalassaemia and sickle-cell anaemia carriers to Europe and in particular to Germany, France, Austria, Austria, Sweden and Serbia. These are countries that have received large numbers of migrants without the experience of Mediterranean countries in terms of managing haemoglobinopathies," he added. Since 2012, he continued, "we have been trying to inform Member States about the problem and prepare them for the increase in the number of new births and sufferers." "The European Commission has allowed us to get to the heart of the matter, to confirm, unfortunately, our concerns in most EU countries and to propose solutions to strengthen health systems. Solutions that stem from our years of experience in 64 affected countries around the world and in particular from Cyprus, which is leading the way in the field of thalassaemia as a global example of disease management," he noted. He said Cyprus was also chosen by the International Thalassaemia Federation as its statutory headquarters and is the only international patient organisation hosted by the island. "Our vision is that small Cyprus with its great global contribution to the field of thalassaemia will soon host a regional, if not global, centre of reference for haemoglobinopathies. The THALIA multi-year programme of activities is this part of TIF's main activities focused on Europe," he added. He further stated that it was implemented with clear objectives: patient empowerment, education of health professionals, preparation of national health systems, and raising awareness among the general public."It faced significant challenges: the need to support sickle-cell anaemia sufferers treated alongside people with thalassaemia, the need to support second- and third-generation migrants, the difficulties of accessing refugee populations due to non-stationary residence, the difficulties of multilingualism, and the suspension of travel and visits due to pandemic COVID-19. Despite this, as you will see below, we have managed as a global thalassaemia family to successfully implement the activities of the programme and place haemoglobinopathies within the health policies of most EU countries." He noted. Englishman also said that although the THALIA project is coming to an end, "we declare that we are in action, that we are not stopping the fight for our patients and that we are ready to provide all expertise and assistance to the European countries affected by haemoglobinopathies, recognizing of course that the level of health services in Europe is already high."Presenting the actions of THALIA 2018-2021, Thalassaemia International Federation's European and International Relations Manager, Eleni Antoniou, said that with the help of the Thalassaemia in Action project, they have managed to build a truly impressive educational platform for both patients and doctors on both thalassaemia and sickle cell anaemia."Right now, with the help of THALIA 2018-2021, the unique educational reference platform has been created for the whole world, not only for EU Member States. Experts from at least 15 countries around the world worked to build this platform and we managed to translate the material to make it accessible in all the languages spoken primarily by refugees-migrants who arrived in Europe in the last 30 years, because migration flows did not start now, they existed in the 1970s," he added. Antoniou said the recommendations made to the EU sounded the alarm about national registers of sufferers. "They are necessary because without them, without recording data and numbers, we cannot take the right measures. It is also very important to inform people, to let the public know, so that they can accept any person who has thalassaemia, whether they live in a country, whether they are a resident or a migrant, because at the moment in most countries in Europe, patients are afraid and ashamed to say they have thalassaemia and are threatened by social stigma. This has concerned us and we would like to call on all stakeholders to work very closely together towards relieving these sufferers who have also been hit by the pandemic." He noted that from 2022 onwards there will be no and no assistance from the European Commission to health-related non-profit organisations.As mentioned at the conference, the absence of national vector/patient registries, the absence of national prevention programmes & Thalassaemia in the majority of EU Member States, and the limited expertise in the countries where the four-year Thalassaemia in Action project was focused (France, Germany, Austria, Sweden), due to the rarity of haemoglobinopathies in the endogenous population, continue to be some of the most complex challenges faced by Member States' health systems. It was also noted that through this project, TIF has proceeded to implement carefully designed actions and activities with an emphasis on public awareness of the "migration" of thalassaemia to Europe, education of patients/parents and health professionals, through e-learning courses, seminars, scholarships, etc., strengthening networking and cooperation among patients, promoting research on haemoglobinopathies at European level and, above all, formulating a set of recommendations for the development of specific policies for the effective prevention and management of thalassaemia. TIF Medical Advisor, Dr Michael Agastiniotis, speaking on Haemoglobinopathies: Challenges for Europe, said that recent years' migratory flows of people from regions with a high prevalence of thalassaemia to Europe have "introduced" this inherited disorder to countries where it was previously extremely rare or even non-existent."On the basis of existing data, it is estimated that there are 30,000 people with major beta-thalassaemia in Europe, the most severe form of the disease, and more than 700,000 thalassaemia carriers today, although in the absence of official national patient and carrier registries in most European countries, these numbers are probably much higher," he added. The TIF recommendations were delivered at the Conference by the President of the Federation, Panos Englezos, to the Head of the EU Delegation in Cyprus, Myrto Zambarta. TIF Executive Director, Dr Androulla Eleftheriou, closing the conference, said that although thalassaemia has always been endemic in the European territory, especially in southern European countries such as Cyprus, Greece and Italy, the disease no longer knows borders and is a growing health, medical and socio-economic challenge for Europe.
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