Thalassemia screening bill a landmark achievement: Dr Tariq

Islamabad

Minister of State for Capital Administration and Development Division (CA&DD) Dr. Tariq Fazal Chaudhry termed the passing of thalassemia screening bill as a landmark achievement in the control of the monogenic disorder saying it will make incumbent upon the health institution and the family of the thalassemia patient to carry out compulsory screening tests of the immediate family members of the affected patient.

"The thalassemia screening will help to identify and treat thalassemia careers, who could become potential breeders of the disease if married to another Thalassemia career. The bill will set the tone for the constituting units of Pakistan to enact more legislation which could pave the way for elimination of this disease from Pakistan," he said.

In Pakistan, each year 5,000 children are born with transfusion dependent Thalassemia Major and the country is seeing a large increase in the disease due to lack of screening and genetic counselling. The disease runs in families and is more prevalent where there are higher rates of inter-marriages within relatives.

The Bill provides that all clinics, hospitals and centres notified by the government for handling and treating thalassemia patients will ensure that blood relatives of the affected children are screened for thalassemia. It will be ensured by the designated hospitals to provide counselling to those blood relatives of thalassemia patients who are getting married.

The Bill further says that in case a clinic or hospital fails to carry out the necessary action, it will face administrative action and fines up to Rs50,000. The relative of the affected person who refuses to cooperate in compulsory screening will also be penalized.

Dr. Tariq said thalassemia is a dangerous but preventable disease which kills a large number of children in Pakistan every year. He said it was the need of hour to take immediate legislative measures to curb the spread of this disease and arrange appropriate care of those patients who have fallen victim of this disease, he added.

The minister said the legislation was a step forward to stem the potential spread of the disease through proactive screening. He said the state’s proactive and precautionary measures to eradicate Thalassemia and save precious human lives was commendable and would be blessing for Thalassemia careers and the future generations.

The Private Member Bill, which was initiated by opposition benches, was passed by the National Assembly after incorporating the technical and legal input provided by the health institutions working under the CADD.