The taboo that goes with thalassaemia testing before marriage

[Naveed Yaseen]

Would legislation for mandatory tests before marriage help?

By Aroosa Masroor

Unlike most prospective grooms, Adnan Moinuddin, did not think twice before disclosing his Thalassaemia (minor) status to his wife’s family prior to the wedding. He felt this was needed and requested his wife to take a blood test before their marriage. “Not everyone will do this, because most men consider this as an insult,” said Moinuddin during an interview with The News, adding that he was more confident about declaring his status because he knew his wife-to-be was educated and would take the right decision once she had been tested.

While Moinuddin, who is an I.T. professional, was lucky to have married a doctor who understood his condition and was willing to take the test before their marriage, most couples are ignorant of the blood disease that can be fatal for their progeny if both partners thalassaemic.

In this regard, the Federal Social Welfare Minister, Samina Khalid Ghurki, recently declared during a public speech at the International Thalassaemia Day on May 8 that the government is considering a legislation to avoid preventable blood complications and other disorders in children. The move has been widely welcomed by doctors and other quarters that consider this a step in the right direction as it would help reduce the burden of patients.

“I honestly feel this is essential because our blood banks cannot cater to the needs of the growing number of patients. We need to educate our people and a law in this regard would certainly help. Couples need to realise how painful it can be for their child to undergo a blood transfusion every 15 days and in some cases, the child cannot survive for long which would be traumatic for them too,” said Moinuddin.

Despite the complications, some continue to argue against the legislation as they feel it would be difficult to implement given the culture of inter marriages within some communities. “Since inter-family marriages are a part of our culture, there is a possibility that most families will not take the law seriously,” remarked Nasreen Haider, a social worker. She also believed that it would be particularly difficult for couples whose marriages are arranged as most families take offence when asked to take a blood test.

A lot of this it has to do with the misconception among people who fail to understand the difference between thalassaemia major and minor patients. “There is nothing wrong if a person has thalassaemia (minor) as it requires no treatment, but when a minor carrier is married to someone with a similar condition, there is a 25 per cent chance that their offspring may have thalassaemia (major),” informed Dr Salman Adil, Consultant Haematologist at Aga Khan University Hospital. In the case of both partners carrying thalassemia major, the chance rises to 50 per cent.

Since most people have large families in the country, the incidence of this fatal blood disease increases, added Dr Adil. According to an estimate, at least 5,000 patients of thalassaemia major are added to the country’s population each year.

Moreover, due to the absence of a blood screening facility at public-sector hospitals, the burden of such patients is being borne by the private sector and the NGOs.

It may, however, be noted that with a 49 per cent increase in the provincial health budget this year, the government has planned to set up thalassaemia centres in most of the major hospitals across the province. Although doctors insist that a law should be introduced to make blood tests mandatory before marriage as it could be a step towards educating the masses.

“In a developing country like ours where most people are uneducated and cannot afford bone marrow transplantation, such an endorsement from the government can help to an extent,” asserted Dr Adil adding that another way to prevent thalassaemia from growing could be abortion before the 16th week of pregnancy for which there is also religious legal permission (fatwa).

“In the case of prenatal diagnosis of thalassemia or other genetic disorders, the couple can opt for abortion and the religion permits us to, but most people are unwilling. Perhaps a law could be helpful here.”

http://www.thenews.com.pk/daily_detail.asp?id=184235