Thalassaemia prevention methods ‘need modernising’

Both the growing number of children born out of wedlock and the new national health system Gesy pose challenges to safeguarding and protecting Cyprus’ extremely strong, decades-long national thalassaemia prevention programme.

Dr Androulla Eleftheriou, executive director of Thalassaemia International Federation (TIF), told the Cyprus Mail that the relatively new health system should be able to respond to patients with chronic diseases, whose needs extend to a much wider range of health services.

“We call for greater priority to be given to the health of our patients, ensuring that national infrastructure and services make basic and advanced care options available to every sufferer,” said Eleftheriou.

She added that municipal authorities and the government should modernise procedures so that a certificate of thalassaemia is also provided to those who now choose to live together and have children outside the church.

In 1983 the church introduced a premarital certificate in their marriage procedures that checked partners for whether they are thalassaemia carriers and likely to have children with the disease.

The association stressed the prevalence of the disease, highlighting that one in seven Cypriots is a carrier of beta thalassaemia meaning that one in 49 couples have a 25 per cent chance to have a child with the illness.

There are over 100,000 carriers of beta thalassaemia and a very high amount have alpha thalassaemia, as such that without a preventative programme there would be 50-75 births a year of children with thalassaemia.

The programme, which has been in operation for over 40 years, provides treatment for 1,150 people with thalassaemia and other related issues.

Genetic counselling and testing are recommended for families who carry the trait.

Eleftheriou was speaking to the Cyprus Mail ahead of World Thalassaemia Day, which will be celebrated for the 19th consecutive time this year on May 8 under the title ”BeAware. Share. Care” with the central theme of “Strengthening education to bridge the gap in thalassemia care.”

“The focus is on proper awareness and education about the disease as they are vital to eliminate barriers that deny many people with thalassaemia around the world access to essential healthcare” she said.