Growth of around 6,000 thalassaemia patients yearly in Pakistan


KARACHI: Every year around six thousand kids are born with Thalassaemia ‘major’ life threatening disease in Pakistan due to negligence behaviour of stakeholders and government authorities.Thalassaemia is a hereditary blood disorder in which the patients, usually children require blood transfusion for their entire life. Omair Sana Foundation (OSF) Joint Secretary Ubaid Hashmi at a ‘Thalassaemia Awareness Camping Programme,’ on Wednesday said, “There is no authority on federal or provincial level through which we could know how fast disease is spreading in our society. However, local Non-Governmental Organisations (NGOs) believe the spread is increasing with rapidly particularly because of lack of awareness.”Prevention is the key to eliminate Thalassaemia from our society where a hundred thousand children are currently dependent on blood transfusion and need fresh blood every after two to three week, Hashmi added.Hashmi said last year health minister of interim government imposed an ordinance of thalassaemia screening before marriage which was also approved as law by Sindh Assembly later in order to combat with it but implementation on this law seemed a distant dream for people of Sindh as majority of people were deprived of drinking clean water. How could they go for the disease screening and the negligence behaviour will destroy the worth of law.At the time when Sindh lawmakers have approved the thalassaemia Bill, they had submitted their reservations and recommendations. We recommended lawmakers to include Thalassaemia screening in ‘Nikah Nama’ marriage contract so that everyone have to go from it before marriage.He deplored no centre of excellence for the treatment of Thalassaemia was establish by the authorities in the public sector in the province where people could go for the diagnosis, treatment and seek information for the prevention of Thalassaemia and other hereditary blood disorders, compelling NGOs and individuals to come forward and perform the gigantic task with their limited resources.Ignorance can destroy a life and accelerate the disease further in our society, he said. According to their estimation more than 0.1 million people are suffering from Thalassaemia major and number is increasing every year by six thousand to five thousand.Before 2002-03, people were unaware of even from the name of the disease but due to continuously struggle from the civil society know many people have adequate knowledge of the disease, he mentioned.OSF have started free screening camp last year in Karachi University, which would continue till 2018 and its aim is to eliminate Thalassaemia from upcoming generation, who will lead Pakistan in future Hashmi said.In connection with Thalassaemia Day on May 8, OSF is launching another ‘Thalassaemia Awareness Camping,’ which will run from May 1 to 8. Programme will also feature free blood tests, seminars, walks, lectures and other activities including sharing of valuable information about the deadly blood disorder and its prevention.Dr Zeeshan Ansari a Pediatric Hematologist associated with the OSF deplored in Pakistan where thousands of children were dependent on others’ blood for their life, the ratio of blood donation was very low and urged people to come forward and donate blood regularly to prevent precious human lives.He urged young adults to get themselves diagnosed for Thalassaemia before marrying, and added a simple blood test could prevent many couples carrying faulty genes from having children with Thalassaemia major, which is an incurable disease. 

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