KARACHI: Speakers at a seminar emphasised that would-be couples must undergo thalassaemia screening tests to know whether or not they carry the genes of the severe blood disorder.

The seminar was organised by the Saylani Blood Bank and Thalassaemia Centre to mark World Thalassaemia Day on Wednesday.

Senior haematologists and health professionals stressed the need of creating mass awareness about thalassaemia to make Pakistan a thalassaemia-free country.

They highlighted that the fatality rate among children with thalassaemia had been on the rise in Pakistan but young people from both genders motivated to get tested for this blood disorder before marriage would go a long way to reverse this trend.

The participants of the event were informed that a blood bank and treatment facility, being run by the Saylani Welfare International Trust, had been offering free-of-cost thalassaemia screening tests to let young would-be couples from underprivileged families determine before their marriage whether or not they carry the genes of severe blood disorder to protect the health of their coming generation.

Speaking on the occasion, Sindh Blood Transfusion Authority secretary Dr Dur-e-naz Jamal said that the community should fully support the government’s prevention and treatment efforts to overcome the thalassaemia disorder in Pakistan.

She urged the audience that pre-marital thalassaemia screening testing should be conducted on a compulsory basis. She said the community should fully back the government’s drive to implement the laws aimed at prevention of the genetic blood disorders.

She said that a mass awareness campaign should be launched to persuade would-be couples to get tested for thalassaemia before their marriage on a compulsory basis.

She said the SBTA had been doing research on various aspects related to blood transfusion and related disorders.

Senior haematologist Dr Ghulam Sarwar informed the audience that the requirement of blood for transfusion services to treat the affected children had lately decreased at the Saylani Blood Bank and Thalassemia Centre. He said that at present 700 children were registered to get treatment services at the centre. In the past, up to 1,600 pints of blood were required to treat them in a month, which has now decreased to 538 pints. He said this observation had indicated that the best treatment and medication services had improved the health of the affected children.

Dr Sarwar said that arranging blood donors for the children with thalassaemia had been a major problem for their concerned parents who continued with this struggle on a lifelong basis.

Haematologist Dr Younus Jamal said that a bone marrow transplant was a way too expensive option to treat thalassaemia costing around Rs six million to Rs10m.

Saylani Trust CEO Madni Raza said that merely treatment and medication were not enough to combat genetic disorders like thalassaemia as people needed to have proper knowledge about such diseases as an effective means of prevention.

He lamented that several Nikah Khawan in the country didn’t have any knowledge about the law adopted for compulsory pre-marital thalassaemia screening tests in the country.

Bahria University Director-General Athar Mukhtar, Dr Azra Rafique, Saylani Trust President Arif Lakhani, Blood Bank director Muhammad Iqbal Qasmani and children with thalassaemia and their concerned parents also attended the session.

Published in Dawn, May 9th, 2024