Fighting thalassaemia
Steps must be taken immediately to control thalassaemia before the numbers of those affected spiral out of control.
The biggest hurdle, according to doctors, is the lack of awareness among people about the disease, frequent inter-family marriages and the hesitancy to get blood screenings done before marriage or at least, before planning to have a baby. PHOTO: FILE
Every year, at least 6,000 children in Pakistan are born with thalassaemia. With over 10 million carriers of this disease in Pakistan, thalassaemia is the most prevalent blood disorder in the country. A thalassaemia patient needs, at least, 12 blood bags a year. The treatment can cost up to Rs2.25 billion annually.
Despite these facts and being one of the most prevalent diseases in Pakistan, the authorities concerned have yet to formulate a health policy to protect people against thalassaemia. While the Sindh Assembly took the lead by passing a Sindh Control and Prevention of Thalassaemia Bill in September 2013, it is too early to say whether the Act would be implemented or be effective, in case it is. The biggest hurdle, according to doctors, is the lack of awareness among people about the disease, frequent inter-family marriages and the hesitancy to get blood screenings done before marriage or at least, before planning to have a baby.
Several non-governmental organisations have been demanding that the government add a clause in the marriage certificate requiring the bride- and the groom-to-be to give certain information regarding their medical history, as well as that of their families, with a focus on hereditary diseases, including thalassaemia. The aforesaid Act, too, makes it mandatory for individuals to get blood tests done to check their thalassaemia status before they get married. Through these steps, the government can save thousands of lives every year. In Iran, Saudi Arabia and the UAE it has become necessary for married couples to be screened by law to check if they are thalassaemia carriers. The carrier status is then mentioned on the wedding certificate. In Pakistan, while there are several private centres for haematological diseases running thalassaemia prevention programmes, they are expensive. The government does not provide any test facilities related to the disease. Steps must be taken immediately to control this disease before the numbers of those affected spiral out of control.
Published in The Express Tribune, January 29th, 2014.
Despite these facts and being one of the most prevalent diseases in Pakistan, the authorities concerned have yet to formulate a health policy to protect people against thalassaemia. While the Sindh Assembly took the lead by passing a Sindh Control and Prevention of Thalassaemia Bill in September 2013, it is too early to say whether the Act would be implemented or be effective, in case it is. The biggest hurdle, according to doctors, is the lack of awareness among people about the disease, frequent inter-family marriages and the hesitancy to get blood screenings done before marriage or at least, before planning to have a baby.
Several non-governmental organisations have been demanding that the government add a clause in the marriage certificate requiring the bride- and the groom-to-be to give certain information regarding their medical history, as well as that of their families, with a focus on hereditary diseases, including thalassaemia. The aforesaid Act, too, makes it mandatory for individuals to get blood tests done to check their thalassaemia status before they get married. Through these steps, the government can save thousands of lives every year. In Iran, Saudi Arabia and the UAE it has become necessary for married couples to be screened by law to check if they are thalassaemia carriers. The carrier status is then mentioned on the wedding certificate. In Pakistan, while there are several private centres for haematological diseases running thalassaemia prevention programmes, they are expensive. The government does not provide any test facilities related to the disease. Steps must be taken immediately to control this disease before the numbers of those affected spiral out of control.
Published in The Express Tribune, January 29th, 2014.