Chandigarh, August 2
The thalassaemics got a reason to smile when the Punjab Governor and the UT Administrator, Justice O.P. Verma, today directed that the 8.8 per cent sales tax on at least two drugs used by persons with this genetic disorder be waived. The drugs are Deferral injection (Desferoxamine) and Kelfer (Deferiprone).
After
inaugurating a blood donation camp organised by the Thalassaemic Children Welfare Association at the PGI, Justice Verma asked the UT Deputy Commissioner and Excise and Taxation Commissioner, Mr Arun Kumar, to see that the sales tax on these life-saving drugs be waived.
The development is significant, as 345 youngsters, including 85 girls, from the region are enrolled with the Thalassaemic Children Welfare Association here. This is not all. Every year, the PGI receives nearly 100 requests for enrollment in this Advanced Paediatrics Centre (APC) unit. India has the largest number of thalassaemia carriers in the world. Every year, nearly 15,000 new cases are added to this number. Only 2 per cent of the cases are clinically detected in the country, while the rest of the children die without diagnosis. Nearly 240 million persons in the world carry thalassaemia genes.
Till date, there is no therapy for the disorder. Bone-marrow transplant is a solution, but it costs about Rs 30 lakh. Still, there is no permanent cure and only regular blood transfusion can prolong the life of the patients.
The patients require blood transfusion to keep up the haemoglobin level, due to the constant destruction of red blood corpuscles.
The association was formed in 1987 after parents of the children suffering from the disorder got together. The PGI Department of Paediatrics chipped in with a special blood transfusion unit at the APC. It was initially set up to accommodate 150 children, but now has 345 children.
A preventive step could be to introduce screening for thalassaemia. Even in order to avoid marriage between two thalassaemia carriers, mass screening is essential. Once a child with thalassaemia is born, further births must be avoided by screening family and relatives, including the ones planning to get married or have a child.
In case of marriage between two thalassaemia carriers, pre-natal diagnosis to check if the foetus is affected should be done between the 10th and 12th week of pregnancy. In extreme cases, parents can then go in for medical termination of
pregnancy. Justice Verma said law should make thalassaemia screening mandatory in schools. Screening should also be made mandatory for couples before marriage.