Thalassaemia International Federation (TIF), based in Cyprus, produces a great deal of work guiding 120 member associations from 58 countries, thus placing the island on the world map in a field where prevention has been achieved, according to the Executive Director of TIF Androulla Eleftheriou.
Today, she told CNA in an interview, there are 660 people in Cyprus born with thalassaemia, which in turn divides into various haemoglobin disorders.
In the past three years, Eleftheriou noted, “there is a slight to moderate increase in births (about 15 children), which may be due to the fact that couples knowingly decide to have a child with thalassemia due to improved health care. Other reasons are births outside marriage in general but also outside religious weddings. ”
As part of its activities relating to the TIF International Thalassaemia Day which is on May 8, a workshop on medical journalism will be held on May 6, in the southern coastal town of Larnaca, under the auspices of the Union of Cyprus Journalists and the University of Nicosia. Cyprus News Agency (CNA) sponsors the event.
Speaking to CNA, Eleftheriou praised the important work of the TIF, noting Cyprus` national strategy on thalassaemia treatment adopted by the Ministry of Health is considered a model on which other countries base their national strategies.
Thallasaemia and other haemoglobin disorders are not limited to Mediterranean countries as was believed many years ago, hence the name Mediterranean Anemia and Thalassemia.
These diseases, she explained, have a very high frequency in countries where there is malaria. It is very high in Asia and the Middle East because of the movement of population and immigration in these countries to northern and western countries such as western Europe and northern Europe and the USA.
Thalassaemia and these disorders, she added, are a global problem and the activity and work of this organization gives guidance and hope to countries where the problem is extensive.
Eleftheriou stressed that the TIF`s mission is the development and establishment of National Control Programmes for the prevention and quality treatment of thalassaemia and other haemoglobin disorders in every affected country.
“Our vision is to establish equal access to quality health care for every patient with thalassaemia and other haemoglobin disorders across the world”, she added.
TIF works towards the establishment of new and the promotion of existing national patient/parent associations for a strong patient/parents voice. It also aims at increasing awareness of everyone (policy makers, carriers, patients, parents, health professionals and the community at large).
TIF also works for the development of educational/communication/awareness programmes for health professionals in the field, patients and parents and the community, including the organisation of local, national, regional, European and international workshops, conferences, seminars and meetings and the preparation, publication, translation and free distribution of educational and awareness material
Eleftheriou said that births of children with thalassaemia have fallen since 1985. “It is a fact that the past three years about 15 children with thalassaemia have been born. We believe that this is an increase. We are worried and have appealed repeatedly to the Ministry of Health”, she noted.
She said the national strategy on thalassemia has been in place since 1979-1980 and there has been no revision by the Ministry of Health to review weaknesses, adapt to new circumstances, publicize any increases, investigate their origins, clarify whether consulting services work and how they can be modernized.
Eleftheriou praised the role played by the leader and president of the Cyprus Antianaemic Association Panos Englezos in creating the TIF, the passion and zeal shown by him for the global leadership of the Agency.
Workshop on Medical Journalism
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Executive Director of TIF Androulla Eleftheriou told CNA to mark International Thalassaemia Day, May 8th, a workshop for journalists will be organized for the promotion of medical journalism on Tuesday 6th of May at the Journalist House in Nicosia.
The workshop is held under the auspices of the Union of Cyprus Journalists and the University of Nicosia and is being sponsored by the Cyprus News Agency (CNA).
Eleftheriou said reporting on medical issues is a very serious matter, noting that journalists should specialize in this field because there is a need for a different approach to these matters in order to inform people correctly and to a certain extent oblige national health services assume their responsibilities.
“We are faced with very difficult times after the financial disaster in Cyprus and we believe that we should take heed and not lie on our laurels. We must speak honestly, tell the truth and demand changes, reforms, improvements”, she said.
“We cannot talk about a European Cyprus in 2014 and see hepatitis B being transmitted with fatal consequences. We cannot talk about shortages of supplies and drugs, about circulation of counterfeit drugs, about thalassaemia patients and other groups of chronic patients not taking the drugs they need to survive. We cannot talk about a Cyprus Europe, where only 55% have access to public hospitals”, she noted.
These things, Eleftheriou added, must be highlighted correctly in the media in order to demand changes and ensure that such issues remain in the limelight. She said Cypriot journalists shoulde specialise more in health issues.
She said that one of the speakers at the workshop will be a BBC expert on covering medical matters, Patricia Mc Nair. Thirty five journalists are expected to participate in the workshop.
There will be interactive discussion and conclusions which are expected to be published.
Asked why the Federation is organizing this workshop on Medical Journalism, she explained that “we have bad experiences in relation to the announcement and description of some drugs affecting medical treatment of thalassaemia patients. Indeed, some reports have significantly delayed the delivery of drugs because of incorrect references. We believe the Workshop can help journalists do a better job.”
