Necessary campaign

Six percent of Pakistanis suffer thalassaemia. This is an extraordinarily high number, with those suffering requiring transfusions for life. While the average life expectancy for thalassaemia major sufferers is 35 years, many of those afflicted by the blood condition in Pakistan die well before reaching this age, often in their teens, because of the lack of availability of quality medical care and safe blood. Terrifyingly, 6,000 new cases of thalassaemia carriers are added to the 12 million already carrying the disease each year. While groups working to prevent and treat thalassaemia discussed the impact of this burden on World Thalassaemia Day – which fell this past Sunday – the question is whether there is sufficient government commitment to bring down the numbers suffering the condition in Pakistan. One of the key requirements for this, as is the case with other genetically inherited diseases, would be testing before marriage and pre-diagnosis made easily available to people across the country.

Currently in Pakistan, 82 percent of all parents are related to each other, and only four percent marry outside their kinship group; 6.8 percent of parents are immediate cousins. This further increases the possibility that thalassaemia will be carried forward to the next generation and emerge in the dangerous thalassaemia major form. For many, this is a sentence of death delivered at birth. Even in the best-case scenarios, thalassaemia major means painful blood transfusions at regular intervals and a denial of a normal, active childhood. Pakistan is one of ten countries in the world with the highest burden of thalassaemia. Four of these nations are located in South Asia. The figures make it imperative that we set up a programme to raise awareness about marriage among close relatives and make testing mandatory for couples seeking to tie the knot. Proposals for this have been put forward at both the federal and provincial level. They have never been implemented or turned into law. It is time that this happened. It is not only thalassaemia that we are fighting but also conditions that cause inherited deafness. The rate for profound bilateral hearing loss is 1.6 per every 1000 persons. This again is an extremely high figure, with inherited factors responsible for many of the cases. The stress must be on ensuring a higher quality life for people and also on reducing unnecessary burdens to our frail healthcare system. Pakistan needs to do all it can to prevent the disease. It is not doing enough. A campaign has to be initiated for this purpose so that families can be warned of the dangers of marriage within the family and the need to break away from tradition for the sake of our future generations.