The steady increase in the number of patients and carriers of thalassemia in Europe, as well as the challenges it entails both for the health systems of EU countries and for the optimal care of patients with the disease, was stressed at the press conference for a statement of the findings of the project "Thalassemia in Action" of the International Federation of Thalassemia (DOTH), which was held on Monday at the offices of the Federation, in Nicosia.
The four-year program of activities (2018-21) of TIF "Thalassemia in Action" (THALIA) was co-financed by the Third Program for Health of the Executive Agency for Consumers, Health and Food (CHAFEA) of the European Commission.
The Head of the EU Delegation to Cyprus, Myrto Zamparta, in her greeting said, among other things, that The steady increase in the number of patients and carriers of thalassemia in Europe, as a result of the increased migration flows from highly prevalent countries in recent years, has made more apparent than ever the need for constant vigilance and preparation of European Member States for sound and timely management. of hemoglobinopathies.
"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 fully heard and addressed, all stakeholders, including the scientific community, patient representatives and health policy makers, must unite "to work together to ensure that research, policy and patients' unmet needs are combined to determine appropriate treatment pathways."
As he said, the pandemic showed us that we can face a risk to our health, but it also showed us that no country and no government can do it alone.
"We are therefore determined to address emergencies such as the pandemic, but it is equally imperative for the European Union to address the long-term challenges," he said.
The President of the International Thalassemia Federation, Panos Englezos, in his greeting said that THALIA is not just a project co-financed by the European Commission, but the strategic cooperation agreement between the Commission and the Federation for the period 2018-2021.
"THALIA started with a focus on recent and past migration flows from countries with a high incidence of thalassemia and sickle cell disease to Europe and in particular to Germany, France, Austria, Sweden and Serbia. "These are countries that have accepted large numbers of migrants without having the experience of Mediterranean countries in terms of managing hemoglobin diseases," he added.
Since 2012, Mr. Englezos continued, "we have been trying to inform the Member States about the problem and to prepare them for the increase of the number of new births and the suffering".
"The European Commission has allowed us to delve into the issue, to reaffirm, unfortunately, our concerns in most EU countries and to propose solutions to strengthen health systems. "Solutions that stem from our many years of experience in 64 affected countries of the world and especially from Cyprus, which is a leader in the field of thalassemia as a global example of disease management", he noted.
As he said, Cyprus was also chosen by the International Thalassemia Federation as its registered office and is the only international patient organization that hosts the island.
"Our vision is for small Cyprus with the great global contribution in the field of thalassemia to soon host a regional, if not global, reference center for hemoglobinopathies. The THALIA multiannual program of activities is part of the main activities of TIF, which focuses on Europe ", he added.
He added that it was implemented with clear goals: empowering patients, educating health professionals, preparing national health systems, and raising public awareness.
"It has faced significant challenges: the need to support patients with sickle cell anemia who are being treated with thalassemia, the need to support second- and third-generation migrants, the difficulties of accessing refugee populations due to travel and visits due to the pandemic COVID-19. "Nevertheless, as you will see below, we as a global thalassemia family have been able to successfully implement the program's activities and place hemoglobin diseases within the health policies of most EU countries," he said.
Mr. Englezos also stated that although the THALIA program is coming to an end, "we declare that we are in action, that we do not stop fighting for our patients and that we are ready to provide all know-how and assistance to European countries that affected by hemoglobinopathies, while recognizing that the level of health services provided in Europe is already high ".
Presenting the actions of THALIA 2018-2021, the Head of European and International Relations of the International Thalassemia Federation, Eleni Antoniou, said that with the help of the "Thalassemia in Action" program, they managed to build a truly impressive educational platform for patients and for thalassemia and for sickle cell disease.
"Currently, with the help of THALIA 2018-2021, the only educational reference platform has been created for the whole world, not only for the EU Member States. Experts from at least 15 countries of the world worked on the construction of this platform and we managed to translate the material to be accessible in all the languages spoken primarily by the refugee-immigrants who arrived in Europe in the last 30 years, because the migratory flows did not start now, they existed in the 70's ", he added.
Ms. Antoniou said the recommendations they made to the EU sound the alarm bell for national records of patients.
"It is necessary, because without them, without recording data and numbers, we can not take the right measures. It is also very important to inform the public, to let the public know, so that anyone with thalassemia can accept whether they live or live in a country or are an immigrant, because right now in most European countries, patients are afraid and ashamed to say they have thalassemia and are threatened by social stigma. "This has troubled us and we would like to call on all stakeholders to work very closely to alleviate those suffering 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 non-profit organizations related to health.
As mentioned at the conference, the absence of national records of the institutions / patients, the absence of national programs for the prevention & treatment of thalassemia in the majority of EU Member States, but also the limited expertise in the countries focused on the four-year project "Thalassemia in Action" (France, Germany, Austria, Sweden), due to the rarity of hemoglobinopathies in the endogenous population, continue to be some of the most complex challenges facing Member States's health systems.
It was noted, at the same time, that through this project, TIF proceeded to the implementation of carefully planned actions and activities with emphasis on raising public awareness about the "migration" of thalassemia in Europe, educating patients / parents and health professionals, through e-learning courses, seminars, scholarships, etc., strengthening networking and collaboration between patients, promoting hemoglobin research at European level and, above all, formulating a series of recommendations for the development of specialized policies for the effective prevention and management of thalassemia.
TIF Medical Advisor, Dr. Michalis Agastiniotis, speaking on Hemoglobinopathies: The challenges for Europe, said that the migration flows of people in recent years from areas with a high prevalence of thalassemia to Europe have "introduced" this inherited disorder in countries where until recently it was extremely rare or even non-existent.
"Based on the available data, it is estimated that people with major β-thalassemia in Europe, the most serious form of the disease, reach 30.000, while thalassemia carriers now exceed 700.000, despite the lack of official national patient and carrier registries in most European countries. "These numbers are probably much higher," he added.
During the Conference, the President of the Federation, Panos Egglezos, delivered the recommendations of the TIF to the Head of the EU Delegation to Cyprus, Myrto Zamparta.
The Executive Director of DOTH, Dr. Androulla Eleftheriou, closing the conference said that although thalassemia has always been endemic in Europe, 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 challenges for Europe.