Joint efforts for Thalassemia Prevention Awareness stressed

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Joint efforts for Thalassemia Prevention Awareness stressed

A Seminar on ‘Transfusion Issues in Thalassaemia Management in Pakistan’ was organized today in Islamabad by the Safe Blood Transfusion Programme (SBTP). Barrister Abid Waheed, Managing Director, Pakistan Bait-ul-Mal (PBM) was the Chief Guest on the occasion. The objective of the meeting was to highlight and deliberate on challenges faced in the provision of timely and safe blood transfusions to the ever increasing thalassaemia major population in Pakistan. Affected patients, parents and management of the private and public sector thalassaemia centers were provided an opportunity to share their experiences, perspective and expectations from the society and the government. A large number of very distinguished medical experts, thalassaemia care providers, patients and parents from all over the country participated in the seminar.

Globally thalassaemia is the most prevalent genetic blood disorder. And Pakistan is among the highest thalassaemia burden countries in the world. There are an estimated 100,000 patients suffering from transfusion dependant Thalassaemia Major who require monthly blood transfusions for their survival. And in the absence of a coherent national narrative the number of thalassaemics in the country is increasing by another 5000 every year.

Speaking on the occasion, Barrister Waheed said that in this day and age it is unacceptable to have such a large thalassaemia population with an unchecked growth. To ameliorate the suffering of the thalassaemia patients the PBM has developed a modern thalassaemia center in Islamabad where quality treatment services are provided to the thalassaemia patients. The PBM plans to establish more similar centers in other cities. PBM also provides financial assistance to 28% of the thalassaemia patients for their treatment. The MD, PBM appreciated the SBTP initiative to organize this unique format Seminar and acknowledged the services of Prof. Zaheer in very successfully promoting blood safety in the country.

Prof. H.A Zaheer, National Coordinator, SBTP in his opening remarks informed that about one fourth of the total blood collections in Pakistan are consumed in the treatment of thalassaemia patients. He stated that unless the thalassaemia epidemic is checked and controlled the blood transfusion system will remain burdened and the patients continue to face blood shortages. He made a detailed presentation in which he highlighted the transfusion related issues faced by the thalassaemia community. Prof. Zaheer also enumerated the achievements of the Blood Programme and its contributions in strengthening and empowering the thalassaemia population.

Dr. Adil Akhtar, a Pediatrician with extensive experience of medical management of thalassaemia, shared the updates from the recent annual meeting of the Thalassaemia International Federation (TIF) and the latest management guidelines. TIF attaches great importance to Pakistan as it is one of the highest burden countries and encourages and supports the national efforts to manage thalassaemia in the country.

The Seminar also included two Panel Discussion sessions in which the patients, parents and the managers of the Thalassaemia Centers shared their experiences, perspectives and expectations from the society and the government. On the basis of the panel discussions recommendations for the way forward was identified. The key recommendation generated was the establishment of a forum at the federal level a ‘Technical Advisory Group on Thalassaemia’ by the government along the lines of the similar groups for Polio and Hepatitis eradication. The Seminar participants also requested SBTP to conduct Quality Audits of the Thalassaemia Center Blood Banks, Data sharing of the Blood Banks and their patients, capacity building of the Thalassaemia centers, collaboration between Thalassaemia Centres and with large tertiary care hospitals for the comprehensive management of the patients. The participants highly appreciated the commitment and efforts of the SBTP in organizing the Seminar and especially liked the Seminar format whereby maximum   participants were provided an opportunity to express their views. It was also agreed to have a Follow Up Seminar later next year to review the progress made.

2018-01-25T21:35:30+00:00