Thalassaemia cases on the rise due to lack of prevention centres: expert

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Renowned Haematologist Dr Saqib Hussain Ansari on Saturday revealed that thalassaemia cases had gone up sharply in a decade in Sindh province due to non-existence of thalassaemia prevention centres at government level.

Talking to PPI, Dr Saqib Ansari said thalassemia cases had doubled in last 10 years in the province due to non-implementation of thalassaemia prevention law and also lack of the prevention centers. He said the Sindh Prevention and Control of Thalassemia Bill was passed about one year ago from the Sindh Assembly but unfortunately this law could not be enforced in letter and in spirit.

He said thalassaemia was a genetic blood disorder prevalent in Pakistan as more than 5,000 babies were born with thalassemia disease every year while 0.1 million children were already living with thalassemia in the country.

He said around 10 million people in their population were thalassemia minor carriers and had the ability to transfer thalssaemia major to their upcoming generation if they marry another thalassemia minor carrier.

Dr Ansari said the provincial government had made a plan to establish thalassemia prevention centers in different areas of province and also allocated million of funds for this purpose in the past but no progress had been made in this regard. He said there were no facilities available for thalassemia patients in major hospitals like JinnahPostgraduateMedicalCenter and Civil Hospital Karachi (CHK). He informed that only patient, Welfare Association ((PWA), a non-governmental organisation, provides treatment and blood transfusion facilities to these patients in Civil Hospital Karachi.

He said non-governmental organisations were carrying 80 to 90 percent burden of thalassemia patients in the Sindh province despite their limited budgets. He said performance of these organisations, running on self-help basis, was exemplary. He urged the government to provide standardised hepatitis B & C, malaria and HIV virus test kits to these organisations for better blood screening. He said the provincial authorities must extend their technical support to non-governmental organisations which were providing blood transfusion facilities to thalassemia suffering children. He suggested the government to keep strict accountability and monitoring of these organisations to get even better results.

To a question regarding the HIV virus in thalassemia suffering children in Lahore, Dr Saqib inferior-quality kits might cause transmission of virus to children. He said high-quality centralised blood banking system was necessary to prevent such incidents.