Giving credit where it’s due
Thalassemia is an inherited blood disorder passed down through families. According to a report approximately 100,000 patients are suffering from Thalassemia in Pakistan and every year 5,000 babies are born with this deadly disease. The disorder results in excessive destruction of red blood cells, which leads to anemia, a disorder in which one’s body doesn’t have enough normal, healthy Red Blood Cells. The patients need regular blood transfusion and iron chelation along with diagnostic investigations on monthly basis which is unaffordable for the majority of families in Pakistan. It is possible to contain the disease through premarital tests by stopping the marriage of a couple who both carry beta Thelassimia.
Sindh deserves credit for being the first province to issue an ordinance and then pass a law to prevent and control Thelassemia in 2013. The law made premarital tests compulsory. The law required the inclusion of a separate column in the nikah namas making it binding for the nikah khuwan to fill the column after checking the medical report of the groom regarding thalassemia. Punjab meanwhile continues to lag behind.
Passing the law however has not proved sufficient to curb the disease. There is a need for raising the consciousness of the people at large about the disease and its connection with parenthood. In rural Pakistan a number of considerations take place in the arrangement of marriages. These include considerations of castes, creeds and social status. In a number of cases consideration is given during the marriage proposals to the exchange of another sibling as a bride or groom. What is more there is not sufficient realisation about the causes of Thelassemia.
Thus the law in Sindh has not made the required impact. What is needed is to launch an awareness campaign about the causes of Thelassemia. What is more side by side with making the law there is also a need to provide Thelassemi testing facilities at the union council/ward level. Similarly issuing of the certificates has to be hassle free.
