‘Thalassaemia genes test should be made mandatory before marriage’

[Naveed Yaseen]

The government was urged to pass legislation to make thalassaemia testing mandatory prior to marriage and launch a campaign against this disease similar to those against polio and TB, as more than 5,000 babies are born with thalassaemia each year in the country.

The authorities were also urged to establish thalassaemia diagnosis centres across the country. Speaking at a press conference at the Karachi Press Club on Monday, Dr Sarfraz Hussain Jafri, Vice President, Thalassaemia Federation of Pakistan (TFP) said blood collection for these patients is the biggest challenge as they die if blood is not supplied regularly. He said prevention of this disease is easy, provided a test is conducted prior to marriage. He said treatment cost of thalassaemia is around Rs56, 000 each year per patient.

Jafri said there are around 70, 000 registered children suffering from thalassaemia out of which 4, 000 are from Sindh. He said each child requires two bottles of blood per month. He added around 2.6 million blood bottles are needed in the country while blood availability is around 1.4 million at present. He said a bill is pending before parliament for passing legislation for a test prior to marriage and urged the government to pass the law.

Moreover, he said there are certain communities in Karachi, which ensure thalassaemia test prior to marriage. He said around 25pc population of Cyprus was suffering from thalassaemia but after introduction of preventive measures, its ratio has been reduced to 0.1pc. Similarly, he said Iran had also initiated preventive measures such as conducting tests. As a result, only 130 children are suffering from thalassaemia there. He said there is a family in Malir of which 23 children are suffering from thalassaemia.

Dr. Zahid Hasan Ansari, head Sindh Blood Transfusion Authority said that seven blood centres are being established in Sindh with the help of German government and a German Bank to ensure safe blood transfusion. Out of which, three blood centres will be set up in Karachi. Jafri said that this project will be completed by 2011.

Furthermore, Jafri said that a two-day 5th thalassaemia conference will be inaugurated in the city on Tuesday (today) in which experts will present their papers.

Meanwhile, Mohammed Iqbal of Kashif Iqbal Thalassaemia centre said around 600 blood bottles are needed in Karachi every day. He said Mufti Rafi Osmani and Iranian scholars have issued Fatwa (religious edict) for terminating pregnancy if test proved that baby has infected with thalassaemia.

Obaid Hashmi of Omair Sana Welfare Foundation said with blood transfusion, iron level among children increases, which required ‘Iron Chelator’ to take out extra iron from body. But it is an expensive treatment, which cost Rs1, 80,000.

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