KARACHI, Dec 17: The Thalassaemia Federation of Pakistan, an umbrella organization of Thalassaemia societies, in close coordination with parliamentarians is expecting to get through a legislation turning pre-marital thalassemia screening mandatory for all local couples planning to get married.
Lt-Gen (retd) Moinuddn Haider, President of the Federation, its general secretary Dr Yasmin Rashid and PMA Karachi's general secretary, Dr. Qaiser Sajjad in a joint a press conference at the conclusion of a two-day second national workshop on Thalassaemia here on Friday, said under the proposed bill, across the board facilities would also be arranged for pre-natal diagnosis to prevent deliveries of possible Thalassaemia major.
Meanwhile, if both of the intending couple are diagnosed to be Thalassaemia minor, they would be advised not to enter into matrimony, and if this was found to be inevitable on their part, steps would be ensured for them to undergo regular pre-natal diagnosis.
TFP President mentioned that a Fatwa (decree) has also been issued by religious scholars who have maintained that ending fetus within 120 days of its conception is not against religious injunctions.
Mentioning that such law also exists in a country like Iran besides many of the other Muslim states, the speakers further opined urgency for concerted efforts to create public awareness regarding Thalassaemia, a genetic disorder which is estimated to have inflicted no less than 6 per cent of the total population.
General Secretary of the Thalassaemia Federation of Pakistan Dr. Yasmin Rashid mentioned that some 120 doctors from across Sindh attended the two-day workshop and were provided all the relevant education besides demonstration regarding the procedure.
A diagnostic machine which does not cost more than US $ 800 and each single diagnostic procedure not costing more than Rs 120 was said to be made available at different institutions.
According to the speakers, a massive campaign for prevention of Thalassaemia was a pre-requisite as high cost of medication and required support for the quality survival of Thalassaemia is beyond national services while generally the existence of such individuals itself is quite pitiable.
Mentioning that monthly expenditure incurred on medication of Thalassaemia major careers is estimated to be no less than Rs 7,000, it was reminded that carriers also require blood transfusions every two to four weeks of their life while excess iron overload that results from excessive blood transfusion requires patients to be administered iron chelation through injections.
The only cure for Thalassaemia was said to be bone-marrow transplantation which may not be feasible for every carrier, the speakers said.
Dr. Jim Thornton, the head of the division of Obstetrics and Gynaecology at Nottingham City Hospital and also the editor-in-chief of British Medical Journal of Obstetrics and Gynaecology, reminded that babies born to Pakistani couples were found to be relatively more inflicted with genetic disorders, including those which may lead to mental retardation and other possible disabilities.
The reason, he said, was the history of interrelated marriages within single family. Dr. Jim Thornton, who conducted the workshop in Karachi, will undertake similar exercise in Islamabad and Lahore in the next few days.
Stavroa Melides, Assistant Secretary of Thalassaemia International Federation, reminded that Thalassaemia major, if supported by state under social security system, may lead a normal and quality life and, in fact, could repay back the expenses incurred on them as they grow as educated and skilled individuals contributing towards national economy.
Among others, Nazim Jiwani of Hussaini Blood Bank and Oncology Trust, Dr. Javaria, Chairman, Medical Board of the Thalassaemia Federation of Pakistan, were also present. -APP