KARACHI: Experts on Saturday demanded that pre-marital screening for thalassaemia be made mandatory across the country and that the registration of a marriage contract (nikah) be linked to the couple’s test reports.

The demand was made at a media briefing held in connection with a campaign launched on May 1 to create public awareness about thalassaemia — an inherited blood disorder that affects haemoglobin production and causes anaemia.

The eight-day campaign features a walk at Hamdard University on May 5, followed by a lamp-lighting ceremony at the Karachi Press Club on May 7 and a seminar.

“Every year, 5,000 children are born with thalassaemia in Pakistan, where the lives of some 90,000 patients with thalassaemia major depend on regular blood transfusions. The total number of carriers of this disease in the country is 10 million,” said Dr Saqib Ansari, a senior haematologist representing the Omair Sana Welfare Foundation (OSF), at the briefing organised at the NGO’s office in Yaseenabad.

Dr Ansari explained that the major reason for the high number of thalassaemia patients is consanguineous (within-the-family) marriages.

“What makes our situation worse is the fact that couples are not legally bound to get tested for thalassaemia before marriage,” he said, adding that pre-marital screening is the only effective way to prevent the disease and reduce the burden of patients.

He demanded an effective countrywide law mandating pre-marital thalassaemia screening and linking nikah registration to the submission of screening reports.

“There should be marriage counselling units at the district level to educate families about genetic diseases. Awareness campaigns should also be conducted at school and college levels,” he said.

He also demanded that no nikah should be registered without thalassaemia screening reports and that thalassaemia status should be mentioned on national identity cards.

The experts regretted that while Sindh is the only province with a law on this subject — the Sindh Prevention and Control of Thalassaemia Act, 2013, which makes pre-marital screening mandatory — it lacks proper implementation.

“Lawmakers in other provinces have passed resolutions for the prevention of this disease but haven’t yet passed a law. We need to learn from countries like Iran and Turkiye and see how they effectively address this health issue,” they said.

To a question, experts stated that 1.8 million bottles of blood are needed every year in the country to meet patients’ needs, regretting that the persistent inaction of our successive governments had turned the situation very serious.

The organisation presented its 24-point recommendations for thalassaemia prevention in the country at the end of the event.

Published in Dawn, May 4th, 2025