ISLAMABAD-Pakistan needs to adopt a national thalassaemia policy and narrative to ensure proper management of the existing thalassaemia population and prevention of new thalassaemia births, speakers said on Saturday.

Safe Blood Transfusion Programme, Ministry of National Health Services, in collaboration with Jamila Sultana Foundation organized an event here to mark the International Thalassaemia Day 2019.

Participants of the activity included a large number of minor thalassaemia patients and their families, representatives of local blood banks, and print and electronic media.

International Thalassaemia Day is observed all over the world in May every year to increase awareness about thalassaemia prevention, control and management.

The Day is also used to pay tribute to the thalassaemia patients and encourage them to lead normal lives despite the challenges posed to their lives for gaining access to regular and safe blood transfusion and chelation therapy.

Speaking on the occasion, Hasan Abbas Zaheer, National Coordinator, SBTP highlighted the significance of access to timely, adequate and safe blood transfusions for the thalassaemia patients.

He recounted efforts of the government to reform the blood transfusion system in the country through the Safe Blood Transfusion Programme supported by German Development Bank KFW grant.

He also highlighted achievements of the Programme including development of a new blood transfusion infrastructure consisting of a network of newly constructed regional blood centres and renovation and up-gradation of the existing hospital-based blood banks all over the country. He added that the biggest beneficiaries of this new infrastructure and blood sector reforms are the thalassaemia major patients.

Zaheer also shed light on successful efforts of the regional countries in eradicating thalassaemia through concerted national efforts backed by strong political commitment through development and implementation of effective national thalassaemia policy.

He added that Pakistan needed to have a national narrative in the form of a national thalassaemia policy to ensure proper management of the existing thalassaemia population and prevention of new births.

In addition, he added that it was essential to establish a truly representative national platform of the thalassaemia patients and families to empower them and provide them a voice so that they can share their experiences and expectations from the government and the society.