Minister of State for Capital Administration and Development Division (CADD) Dr Tariq Fazal Chaudhry termed the passing of Thalassemia Patient Bill, 2017 a landmark achievement, as it will set the tone for the constituting units of Pakistan to enact more legislation which will pave way for elimination of this disease from the country.
National Assembly passed the Compulsory Blood Test of the Relatives of Thalassemia Patient Bill, 2017, making it 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 before entering into the wedlock.
Pakistan Peoples’ Party’s (PPP) leader Dr Azra Fazal Pechuho tabled the bill as private members’ bill that was passed by the assembly after incorporating the technical and legal input provided by the health institutions working under the CADD.
The screening will help identify and treat thalassemia careers, who could become potential breeders of the disease if married to another Thalassemia carrier.
The bill provides that all clinics, hospitals and centres notified by the government for handling and treating thalassemia patients will ensure that the blood-relatives of the affected children are screened for thalassemia.
It will be ensured by the designated hospitals to provide counseling to those 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 Rs 50,000. The relative of the affected person who refuses to cooperate in compulsory screening will also be penalised.
Dr Tariq said that thalassemia is a dangerous but preventable disease which kills a large number of children in Pakistan every year. 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 further said that State’s proactive and precautionary measures to eradicate thalassemia and save precious human lives is commendable and will be blessing for thalassemia carrier and the future generations.
In Pakistan, each year 5000 children are born with transfusion dependent thalassemia major, and the country is witnessing a significant increase in the disease due to a lack of screening procedures and genetic counseling. The disease runs in families and is more prevalent where there are higher rates of cousin marriages. The legislation is step forward to stem the potential spread of the disease through proactive screening.