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- Ελληνικά
It is with great pleasure that I address the Press Conference organised by the National Thalassaemia Committee to celebrate World Thalassaemia Day.
Haemoglobinopathies are a group of genetic inherited diseases characterised by reduced haemoglobin production, resulting in a severe form of anaemia. These include thalassemia, a disease with a high prevalence in our country as well as in other Mediterranean, and not only, populations.
Currently, it is estimated that almost 7% of the world population are carriers of abnormal haemoglobin genes responsible for clinically severe forms of thalassemia, sickle cell disease and other types of haemoglobinopathies.
In Cyprus the estimated number of patients with haemoglobinopathies is about 1,400, including 697 with major beta-thalassaemia, 104 with intermediate beta-thalassaemia, and the trend is increasing due to increasing migratory flows from countries where the disease is endemic.
Our country, along with Greece and Italy, has been a pioneer in the control and treatment of thalassaemia since the 1970s when Cypriot parents and patients, assisted by several dedicated scientists, the church and the state, collectively demanded solutions against the onslaught of a disease that was then costing the lives of countless of our fellow human beings.
This unprecedented and exemplary joining of forces of many stakeholders and partners to achieve a common goal, with the World Health Organization as a valuable ally, has gradually borne fruit and made Cyprus a global flagship in the prevention and clinical management of thalassaemia for many decades. It is indicative that the Thalassaemia Centre was designated in 1986 as an official collaborating reference centre of the World Health Organization for its contribution and expertise in the field.
The National Thalassaemia Treatment Programme that was implemented in those years and is still in force today is based on the pillars of information, prevention, treatment and research to ensure the most holistic management of the disease.
However, despite the successes of the past - which have led to Cyprus now having the highest average life expectancy internationally for people living with the disease and one of the highest performances in the social inclusion of patients - a well-established strategy for the control and management of thalassaemia had not been developed until recently.
The need for such a Strategy has become increasingly urgent in recent years due to major developments in the scientific understanding of the disease and the diversification of patients' needs, the new environment created by the national reform of the GHS, and the increasing challenges and threats to public health that require targeted preparedness and response efforts by the state, as they affect and concern, first and foremost, vulnerable groups of the population, especially people with chronic diseases.
Recognizing these new facts and in its effort to continuously upgrade the services provided to people with thalassaemia, the Ministry of Health proceeded to the establishment of the National Thalassaemia Committee, with the main task of establishing and implementing the National Strategy for Thalassaemia and other Haemoglobinopathies.
Thanks to the work of the National Committee, there is now a coherent framework of methodology and action for the control and treatment of thalassaemia through the collaboration of scientists from the medical and academic community, organised patient groups, ministry services and experts.
Within the framework of the National Strategy, detailed suggestions and recommendations are made to the competent authorities and actions are promoted, protocols and procedures are adopted in order to ensure and further improve the quality of life of people with thalassaemia and other haemoglobinopathies, especially those suffering from sickle-cell anaemia.
Although we now have even more guarantees and weapons to maintain our leadership as a global benchmark in the treatment of thalassaemia, vigilance and vigilance are needed to ensure that the National Strategy is effectively implemented and continuously strengthened, making use of the various policies and tools provided by the EU.
In addition to the above, the Ministry of Health is also initiating the signing of a Memorandum of Understanding with the International Thalassaemia Federation to further strengthen our cooperation on this important issue.
Friends
With global developments in the field of medicine running at high speed, the great challenge today is to manage to bring major scientific achievements closer to patients and to make therapeutic innovation more accessible and affordable to those who need it.
With these few words, I would like to thank the National Thalassaemia Committee for all its efforts to support thalassaemia and sickle-cell anaemia patients through its actions, but I would also like to convey my own personal support by offering, to the extent possible, all the resources for the benefit of their health in order to contribute to the achievement of the desired goal and outcome: The better health, quality of life and social inclusion of our fellow human beings with these inherited blood disorders.
Contents of this article including associated images are owned by PIO
Views & opinions expressed are those of the author and/or PIO
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