May 08, 2008	Thursday	Jamadi-ul-Awwal 2, 1429

PESHAWAR, May 7: As the medical community is going to organise ceremonies to mark the World Thalassaemia Day on Thursday, the number of children afflicted with the killer ailment is soaring due to the non-availability of treatment facilities at the state-run health institutions.

Pakistan, being signatory to the United Nations’ Child Rights Conventions has terribly failed to protect the children against diseases. Thalassaemia is the most prevalent inherited blood disorder among children and according to paediatrician, an estimated eight million are believed to be suffering from it countrywide.

The affected children have less chances of survival because they consume blood so speedily that initially they need blood transfusion every three months, then every two months and then on weekly basis. Due to non-availability of blood and lack of blood donation culture, the children often end up at the privately-run blood transfusion centres, which cause them hepatitis and other killer ailments.

Experts suggest measures to put brakes on the disease. Avoidance of intra-family marriages is one of the reasons needed to be tackled through awareness and legislation. Iran, Saudi Arabia, Malaysia, Egypt and India are among the few countries that have controlled the disease through legislation and public awareness.

In the UK, the number of thalassaemia patients is only 300, while in Italy no thalassaemia child has been born over the past 10 years. Same is true for other developed countries.

The longest surviving patient in Pakistan, who lived for 27 years in the province, was the brother of a doctor, who took extreme care of him, but ultimately he died. For other children, the situation is extremely dangerous because they couldn’t celebrate their fifth birth anniversaries.

The only treatment available for such children is the bone marrow transplantation, which cost about Rs1.5million. Not that but the children are required to receive subsequent treatment that cost Rs20,000 a month.