Over 50,000 beta thalassaemia kids in Pakistan

LAHORE: Thalassaemia Federation of Pakistan (TFP) secretary-general Prof Dr Yasmin Rashid has said the Beta Thalassaemia is the most common inherited disorders in Pakistan with a prevalence rate of six per cent. “This translates that six out of every 100 Pakistanis carry this mutant gene”, Dr Yasmin said while talking to reporters at the Lahore Press Club on Thursday. Like other parts of the country, the International Thalassaemia Day was observed in the provincial capital on Thursday. The teaching institutions, NGOs and medical experts organized programmes, ceremonies, walks and other activities to sensitize public that preventive measures were the only solution to avoid the fatal disease. Prof Yasmin said: “May 8 is a reminder that we owe a responsibility to look after the children suffering from this genetic disorder and to prevent the disease from occurring in our future generation.” With a population of 180 million, around 11 million people are healthy carriers of this gene and when two carriers marry each other there is 25pc chance of giving birth to a child having affected with thalassaemia in each pregnancy. She said that there were over 50,000 beta thalassaemia children in Pakistan, who required regular monthly blood transfusions and chelation therapy to withdraw the excess iron from their bodies. “At least 44 thalassaemia associations of Pakistan have joined hands and formed the Thalassaemia Federation of Pakistan (TFP)”, Prof Yasmin said. The purpose of establishing the TFP is to support various associations nationwide which work for the cause of treatment and prevention of thalassaemia. The TFP provides a platform that unites associations to work for free exchange of information and share experiences which helps in forming a collective forum against thalassaemia. The TFP achievements include the development of treatment and prevention protocols of thalassaemia in Pakistan. She said the treatment of thalassaemia was expensive and the government did not give due importance to the disease. Many thalassaemia patients often die without diagnosis while those diagnosed find it hard to get adequate treatment. One of the ways to reduce the massive socio-economic burden is to prevent the birth of affected children. So far the burden of treatment and prevention of thalassameia has mainly been borne by NGOs. Recently, the Punjab government has initiated the Punjab Thalassaemia Prevention Programme which is an important first step towards the prevention of disease in the province, she said. Prof Yasim said the TFP urged provincial governments to provide free treatment and prevention services to thalassaemia patients. The prevention programmes should constitute a number of initiatives starting from creating mass awareness about thalassaemia. Secondly, there should be a target screening of carriers -- the relatives of any family having a thalassaemia affected child should be screened extensively to identify carriers particularly in those of reproductive age. At least 30pc of carriers can be identified through this procedure which is cost-effective as well. Once these families have been screened, they should be given genetic counseling about the condition, how it is transmitted from one generation to another and what are prevention options available to risk couples. Finally, the risk couples should be provided with the facility of prenatal diagnosis so as to prevent the birth of affected children. Such prevention programmes are actively being followed by countries like Cyprus and Iran which have resulted either in complete control of thalassaemia or significant reduction in the disease, Prof Yasmin said. Meanwhile, an awareness walk was held on the campus of the Government College University, Lahore, under the auspices of its Blood Donation Society (BDS) to mark the International Thalassaemia Day. Vice-Chancellor Prof Dr Muhammad Khaleequr Rahman led the walk while eminent columnist Munir Ahmed Qureshi (Munno Bhai), chief proctor Saqib Iqbal, Director Facility Yousuf Bashir, BDS Adviser Dr Babar Naseem Aasi, a large number of faculty members and students also participated in it. The students carried banners and placards inscribed with slogans regarding thalassaemia awareness. Prof Rahman called upon students to go door-to-door and make aware every member of society about thalassaemia. Munno Bhai said in his address: “Prevention is better than cure, so every member of society must be screened by a simple blood test before marriage.” “Our neighbour country, Iran, has defeated this disease through legislation and Pakistani lawmakers should also keep Iranian model in mind to weed out thalassaemia,” he said. Prof Yasmin said the only way to reduce this massive socio-economic burden was to prevent the birth of affected children by diagnosing an affected fetus genetically as early as in 11 weeks of pregnancy. She said the prenatal diagnosis for Beta Thalassaemia was introduced in Pakistan with a first test on May 1, 1994. In the last 20 years, according to the available statistics, she said, only 10,000 couples had availed this facility. “Ideally, if we really want to prevent Beta Thalassaemia in Pakistan, this facility should be offered to 20,000 couples a year,” she stressed.