Absence of coherent national narrative blamed for high thalassaemia incidence

Islamabad : With Pakistan being the highest thalassaemia burden country in the world, blood transfusion specialist Prof Hasan Abbas Zaheer insists that the absence of a coherent national narrative is causing the incidence of this genetic blood disorder to increase alarmingly.

“Thalassaemia is the most prevalent genetic blood disorder in the world. And with an estimated 100,000 patients suffering from transfusion-dependent Thalassaemia Major, Pakistan is unfortunately the highest thalassaemia burden country in the world. These patients are dependent on monthly blood transfusions for their survival. The number of thalassaemics in the country is increasing by around 5,000 every year due to the absence of a coherent national narrative. In this day and age, it is unacceptable to have such a large thalassaemia population with an unchecked growth,” he told ‘The News’ on the International Thalassaemia Day marked on Tuesday.

Professor Hasan, who is the national coordinator for the government-run Safe Blood Transfusion Programme, said thalassaemia was a preventable disorder, which caused much misery to the patients and their families besides creating a huge burden on the already resource constrained and stretched national healthcare system, especially the blood transfusion system.

“It is estimated that at least one fourth of all annual blood donations in Pakistan are transfused to thalassaemia patients. This is despite the fact that not all the patients have access to timely or regular transfusion support. Unless this unrestrained increase in the thalassaemia epidemic is addressed and controlled, the national healthcare system as well as the blood transfusion system will remain stressed,” he said.

The SBTP coordinator said the government had been implementing blood safety systems reforms in the country since 2010 from the platform of the Safe Blood Transfusion Programme co-financed by the German and Pakistani governments.

According to him, the programme is meant to reform the existing fragmented blood transfusion system in the country and replace it with an internationally recommended coordinated blood transfusion system.

The first phase of the programme was successfully completed in 2016 with the establishment of a network of 10 modern regional blood centres, and renovation and up-gradation of 60 existing hospital-based blood banks, while the second phase is being implemented for the expansion of the initiative’s size and scope with thalassaemics being the single largest beneficiary of these system reforms. In addition to the infrastructure development, the soft component of the project consists of preparatory technical work to lay the foundations of a new system of good laboratory, manufacturing and transfusion practices.

Professor Hasan, however, warned, “the blood safety reforms process is a losing battle unless we control and prevent thalassaemia. The need of the hour is to work in a methodical manner and identify our national priorities regarding thalassaemia and compare them with the successful regional experience.”

Stressing the need for the formulation of the National Thalassaemia Policy through extensive national consultations, he said the initiative should cover all aspects of thalassaemia from prevention and control strategies to management guidelines to prenatal and routine diagnosis to uniform and effective legislation to mass communication strategies to research and development.

“This approach has been yielded excellent results across the world and so, there is no reason why this if backed by strong political commitment doesn’t deliver the goods in Pakistan,” he said.

Considering the gravity of the situation, the SBTP coordinator called for the formation of the Technical Advisory Group for Thalassaemia by the government with representation of all public and private sector partners.

“The proposed TAG will identify and develop consensus on all aspects of thalassaemia in the country and develop uniform standards including advocacy, prevention and control strategies, communication plan, management guidelines, prenatal and routine investigations and diagnosis, uniform effective legislation, empowerment of patient and parent groups, transfusion protocols, research and development. This will be a very suitable platform to launch the national efforts to prevent and manage thalassaemia in the country,” he said.