Huge strides in thalassaemia treatment

source: Cyprus Mail, http://cyprus-mail.com/2017/05/06/huge-strides-thalassaemia-treatment/ 

Around 600 people in Cyprus suffer from thalassaemia and 16 per cent of Cypriots are carriers, putting them among the highest percentage in the world, according to the Cyprus-based Thalassaemia International Federation (TIF).

In an announcement to mark World Thalassaemia Day on Monday, May 8 the group highlighted Cyprus’ role as a pioneer in measures to contain and treat the potentially fatal condition, but warned it needed to reassess its national strategy to stay ahead.

More than five million children born each year around the world are carriers of a form of severe hemoglobinopathy, mainly thalassaemia and sickle cell anaemia, of which a large percentage die before the age of 15 due to lack of proper treatment.

May 8 is an opportunity to raise awareness around the world for countries to introduce national programmes of prevention and treatment of thalassaemia, said the executive director of TIF, Dr Androulla Eleftheriou.

She said that seven per cent of the global population is a carrier of a severe hemoglobinopathy, while Cyprus, with one of the highest percentage of carriers at 16 per cent, may have been the first country in the world to recognise in the 1960s the great necessity of timely and effective management of thalassaemia.

Eleftheriou said that for Cyprus to remain a pioneer in terms of preventing and treating thalassemia, it needed to reassess its national strategy “to include new dimensions, new demographics and modern changes, allowing us to capitalise on all these dramatic scientific advances of the last five years”.

Back in the 1960s, Eleftheriou said, despite limited knowledge of genetic aetiology in Cyprus “the desperate voice of patients, their parents and families” organised themselves in 1968 into perhaps the first international organised patients’ group.

“It was the starting point for serious reflection and action and decision-making by the state,” she said.

Their persistence, she said, led to the introduction of a national programme on the prevention and treatment of thalassaemia, at a time when the elements of this strategy were unknown internationally, even to specialist doctors.

“The existence of a common goal and the recognition of a common, powerful, multi-dimensional ‘enemy’ made [healthcare specialists] join forces, resulting in a significant reduction in the births of children with thalassaemia since 1980,” she said.

In 1986, the Thalassaemia Reference Centre was set up in Cyprus, possibly the first in the world, which led to the continuous improvement in life expectancy and quality of life for thalassaemia sufferers.

Today, Eleftheriou said, there are around 600 people with thalassaemia in Cyprus, most of whom live an almost normal daily life.

She added that today, thalassaemia can be prevented and dealt with, while new medication and protocols are on their way “that will bring its treatment and management to another era – where thalassaemia will be a chronic, fully manageable illness, with patients enjoying a high quality of life”.

This however, will only be possible, she said, in countries where a national strategy is in place and where thalassaemia is a priority in a country’s healthcare system.

The results of Cyprus’ national programme, along with those of Greece, Italy, the UK, and the US, have become an example to other countries, she said, while the Cyprus based TIF supports and trains today hundreds of thousands of patients from 68 countries, and supports the actions of governments and organisations such as the World Health Organisation.