A child is born with thalassemia major every 90 minutes in Pakistan, but this entirely preventable disease can be eradicated within a generation through one simple step — mandatory pre-marital screening for all couples.
This was the key message delivered by renowned paediatric hematologist Dr Saqib Ansari during a press conference in Karachi on Saturday, where he was joined by Dr Rahat Hussain and Nazir-ul-Hasan under the banner of the Omair Sana Foundation, ahead of World Thalassemia Day 2025.
The press conference marked the start of a week-long awareness campaign being held in connection with World Thalassemia Day, observed globally on May 8.
According to Dr Ansari, over 10 million Pakistanis are thalassemia carriers and an estimated 5,000 to 6,000 children are born with thalassemia major every year. Currently, more than 90,000 children across the country are living with the disease and rely on monthly or bi-weekly blood transfusions for survival.
He said the overwhelming cause of this blood disorder is inter-family marriages without prior screening, compounded by a dangerous lack of public awareness and government enforcement of preventive laws.
Dr Ansari said it was promising that all four provincial assemblies, the National Assembly, and the Senate have passed resolutions or bills regarding thalassemia prevention. In Sindh, a bill has already been signed into law by the governor.
However, the tragic irony remains that none of these laws are being effectively implemented, and the rate of new thalassemia births continues to rise. He called this a national failure that is costing lives and placing immense pressure on the country’s fragile health system.
The Omair Sana Foundation, which has been providing treatment and raising awareness for the past 20 years, is now campaigning to make thalassemia screening mandatory before marriage.
The organization is also calling on the federal government to launch a national action plan for thalassemia prevention and awareness, modeled after successful initiatives in countries like Iran, Turkey, and Italy.
Dr Ansari said the foundation will organize a series of awareness events from May 1 to 8, including a walk at Hamdard University on May 5, a candlelight vigil at Karachi Press Club on May 7, and a seminar on May 8 to mark World Thalassemia Day.
He urged the government to make thalassemia screening reports a legal requirement before registering any marriage, and to train Nikah registrars to enforce this rule. He also called for free screening facilities at all public hospitals, especially for couples planning to marry and for pregnant women, so that affected fetuses can be identified early.
Public education campaigns must be launched through national media and digital platforms, and awareness lectures should be conducted at schools, colleges, and universities to ensure young people understand the implications of the disease from an early age.
Dr Ansari appealed to the health ministry and the Prime Minister’s Office to immediately allocate funds for thalassemia patient care and to implement a national digital database of carriers and affected patients. This, he said, would help in effective tracing, screening, and long-term planning.
He warned that without mandatory laws and a coordinated government response, Pakistan would continue to see thousands of children born with a disease that is entirely preventable. The problem, he said, is not lack of knowledge or medical technology, but lack of will, enforcement, and seriousness.
Experts called for urgent action from all segments of society — policymakers, religious leaders, educators, media professionals, and healthcare workers — to come together and stop this silent epidemic. Dr Ansari said Pakistan cannot afford to wait any longer, and that the country must now choose between prevention and tragedy.
Published in News Daily on 04-May-2025.
