Pakistan needs national narrative on Thalassaemia

World Thalassaemia Day

Islamabad: Pakistan needs 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 Thalassaemia births.

A demand to this effect was tabled at an International Thalassaemia Day celebration organized by the Safe Blood Transfusion Programme (SBTP) here on Monday. The highlight of the event were colourful performances by Thalassaemic children who demonstrated their resolve to lead normal lives despite facing the challenges posed by regular blood transfusions and other medical treatment.

Minister of State for Information Maryam Aurangzeb and Chairman of Pakistan Bait-ul-Mal, Barrister Abid Waheed were the chief guest and guest of honour, respectively. The event was a joint venture of SBTP, and was co-hosted with the Jamila Sultana Thalassaemia Foundation (JSTF) and Burhany Welfare Trust (BWT).

Speaking on the occasion, Maryam stated that blood transfusion, which is the cornerstone of Thalassaemia treatment, has been identified as a priority area in the country’s health sector. “With the creation of a new blood transfusion infrastructure relying on voluntary blood donations, the quality of services to thalassaemia patients have improved significantly in the last four years,” she added.

Barrister Abid Waheed informed that PBM is working to improve the plight of Thalassaemic children by providing financial assistance for their treatment. Referring to the establishment of a Thalassaemia Centre in Islamabad, which is providing services to local and outstation patients, he assured that similar centres as well as a state-of-the-art Bone Marrow Transplant Centre will be established in other parts of the country as well.

The National Coordinator of SBTP, Professor Hasan Abbas Zaheer, highlighted the significance of access to timely, adequate and safe blood transfusions for Thalassaemic patients. He maintained that the biggest beneficiaries of improvements in the blood sector are the life-long transfusion-dependent Thalassaemic major patients. He also shed light on the successful efforts of regional countries in eradicating Thalassaemia through concerted national efforts backed by strong political commitment and the development and implementation of effective National Thalassaemia Policies.

Colonel (r) Tauqeer Abbas from JSTF highlighted the services of his NGO in taking care of a significant number of thalassaemia patients in Islamabad, Rawalpindi and surrounding areas.Murtaza, a voluntary blood donor with more than 125 donations, also spoke on the occasion and shared the experience of his just concluded nationwide road trip along with thalassaemic children to create awareness about the disease in remote corners of the country.