Thalassaemia ignored

Published May 10, 2014

EVERY year on International Thalassaemia Day, observed last Thursday, we are reminded of the risks this genetic blood disorder poses to the population. Where the public sector is concerned, thalassaemia is largely ignored. However, the numbers are too worrisome to overlook. According to an official of the Thalassaemia Federation of Pakistan quoted in this paper, there are around 50,000 children in the country with beta thalassaemia. And there are said to be approximately 11 million “healthy carriers” of the thalassaemia gene, which means that if two carriers marry, there would be a 25pc chance of giving birth to a child with the disorder. Khyber Pakhtunkhwa reportedly has the highest number of children born with thalassaemia. Treatment is an expensive undertaking, as those suffering from the ailment need to have a monthly blood transfusion as well as chelation therapy. Permanent treatment through bone marrow transplant is prohibitively expensive. In the light of such facts, it is no wonder that medical experts say preventive measures are the best option to halt the spread of thalassaemia.

There are two fronts the state needs to work on to counter thalassaemia. Firstly, there needs to be a widespread public awareness campaign to warn people of the effects of the disorder and the factors that can lead to the birth of children with thalassaemia. People need to be made aware of the risks of marriage between cousins, a common cultural practice in this part of the world, while more significantly, the importance of screening couples before marriage, especially in families where there have been cases of thalassaemia, should be emphasised. Once aware of the risks, people can make an informed choice whether or not to go ahead with the union or to have children. Countries like Iran have successfully controlled thalassaemia through such measures. The second point pertains to free or low-cost treatment facilities. Many of those suffering from thalassaemia are from the lower-income bracket, and the government must do all it can to give them monetary respite.

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