The news item that ‘the Sindh health department plans to introduce a fast and simple test to be conducted at its health care centres across the province to detect male thalassaemia carriers’ brought the fact to mind that a number of hereditary and sexually transmitted diseases such as thalassaemia, HIV/Aids, Hepatitis B and C are on the rise, though these can be prevented and controlled through protective measures.
One of these preventive measures is pre-marital blood screening for people planning to get married. Most people do not know the exact condition of their health; a healthy looking person may have undetected health problems, or be a silent carrier of infectious or hereditary diseases. Pre-marital blood screening helps the couples considering marriage to identify potential health problems and risks for themselves and also their offspring. Couples who are closely related run the risk of having children with genetic birth defects such as Down’s syndrome and thalassaemia; hence, it is vital for these couples to be screened in order to help them take necessary precautions or treatments, in case they have any genetic problem.
Thalassaemia, a hereditary condition, is passed on from parents to children through their genes. A child usually does not develop symptoms unless both parents carry a thalassaemia gene. If only one parent has thalassaemia and passes it on to the child, the child would only have thalassaemia trait — this often goes undiagnosed because it does not blow into full blown disease and produces no or few symptoms, and is often only discovered when a baby is born with thalassaemia.
HIV and Hepatitis B and C viruses are life threatening diseases that can be transmitted by blood, sexual intercourse and body fluids. The viruses may remain dormant for months or even years in carriers without showing any symptoms. Marrying a carrier of these illnesses puts the spouse and their baby at risk of getting the infection.
Legislation on obligatory premarital blood screening for couples to protect their children from thalassaemia and other diseases is in the pipeline at the provincial and national levels since last year. It is believed that the passage of the premarital blood testing bill would not only reduce the incidence of thalassaemia, HIV/Aids, Hepatitis and other hereditary diseases but also save the whole family from the financial and emotional problems ensuing from hereditary blood disorders. Despite this, a lot of apparently minor issues need to be considered regarding its implementation and effectiveness.
Given the low literacy rate, the implementation of such a law seems quite difficult as people would not understand its importance and would try to avoid getting tested. Unless effective and intense awareness campaigns are run it would be difficult to make the law acceptable.
The cost factor is also an important issue; people would consider it an extra expense and hesitate from getting the test done. Logically speaking, such tests should be carried out free of charge at government hospitals at all levels. But will the needed funds be allocated is a big question. It is also not clear as to who would check if the test has been undertaken. If, as reportedly proposed in Khyber Pakhtunkhwa, the responsibility is placed with the Nikah registrar, there is the possibility of manoeuvring and working out a way around the law by people not willing to get the test done. It would give rise to corruption and legal violations. Then the authenticity of the certificate also has to be considered, as there is a possibility that people may submit false certificates. We all know that in our country one can buy any kind of fake certificate.
Then there is the issue of confidentiality. The disclosure of a person’s health status, especially HIV, not only violates their rights, but leads to social stigmatism and discrimination. An individual’s right to privacy must be respected, though it is a minor concern when compared with protection and prevention it offers as an HIV infected spouse can endanger many lives, especially their children’s. The best way to avoid this is to ask for an HIV test before an individual gets married. It would also help protect women, who in a lot of cases are infected by their partners. It will also reduce the cost that society incurs on the treatment of diseases like Aids.
There is also the possibility of false positive results — there is the possibility of incorrect reports, especially considering the state of our laboratories and health centres — which can lead to victimisation given the stigma attached with HIV. Someone who is not positive may never be able to marry. And, a person can also get infected after marriage, since, and it is a fact, a married person may develop extra marital relations, or through unscreened blood transfusion.
Despite a positive test, a couple may still decide to go ahead and get married. In such cases counselling should be provided to the couple so that they realise the danger and become solely responsible for the health concerns of their off springs.
Hopefully, if the effects of thalassaemia and other blood disorders are properly explained many couples would refrain from entering the relationship and endangering their children’s health and well-being.
The writer is a member of the staff at Dawn Newspaper.