Getting wed? Match your blood

If one asks an average Indian about Thalassemia, chances are that he or she may not even have heard about it. According to estimates, in India, more than 10,000 children are born with thalassemia every year due to lack of awareness among couples. This ignorance is also leading to a rise in the number of deaths among thalassemic patients, most of which is in the rural areas.

It is time, we upped the ante. Wedding is a complex social phenomenon, and partners are selected based on parameters ranging from family or traditional reasons. We have many norms which guide our marriage and 1 age-old practice is that of matching the ‘Janam Kundli’ (astrological charts) of the would-be couple. While this may be a matter of personal belief, we must ensure the 2 must also get tested for thalassemia at an accredited medical diagnostics laboratory – and this should be an additional criterion for qualification for marriage. Though this is a must in families with a history of thalassemia, it would be very beneficial for everybody to know their thalassemia status.

Thalassemia, a blood disorder, is caused by the weakening and destruction of blood cells. It is also caused by variant or missing genes, which severely affect the making of hemoglobin protein that helps red blood cells carry oxygen. If either parent is thalassemic then there is a 25% chance that their progeny will have the disorder as well. Such a child with thalassemia is called thalassemia major and these children require blood transfusion at regular intervals. Hence, in such cases, it is best to avoid pregnancy.

Premarital screening is a good preventive strategy. If the policy of premarital screening were to be successful, control of thalassemia in India could have been achieved a long time ago, because this course of action has been available for decades. The programme of prevention through carrier screening and prenatal diagnosis should receive the highest priority in order to reduce the birth of affected children.

Talks have been on for initiating control programmes in states that have high prevalence of carriers of B-thalassemia, yet nothing concrete has been done. Even without a control programme in place we must motivate the obstetricians to screen every woman at first visit for carrier status of thalassemia. The would-be husband too should be screened. Comprehensive genetic counseling is offered to all proved or suspected couples at risk by trained personnel. If the couples decide to marry, they are referred to health centres to assist them in family planning and genetic testing. Premarital screening in extended family members, followed by prenatal diagnosis is the most effective strategy for control of thalassemia.

However, if a child is born with this problem, the only approach to the radical cure of the important hemoglobin disorders is bone marrow transplantation in cases where suitable donors are available.

In many countries, like Iran, premarital screening followed by proper counseling has reduced the numbers of births of affected babies. And there have been improvements in the symptomatic management of  these conditions over the last 20 years.

According to a paper in International Journal of Medical Science & Public Health, a unique experiment involving medical students may offer hope of containing this problem. In Central India, where the prevalence of thalassemia and sickle cell anaemia is high, premarital screening is being implemented for the first time to check these disorders.

The study proposes that by targeting the premarital population through scientific intervention, we can hope to reduce the prevalence of thalassemia in coming years.

There is a need to increase the number of centres in India which are able to perform premarital diagnosis, and provide this facility at a subsidised cost  and introduce quality control programmes. Investment in grass-root level techniques for premarital screening would be worthwhile, as this would help to provide diagnosis in peripheral areas also.

(The writer is senior Consultant & Director, Centre for Bone Marrow Transplant, BLK Super Speciality Hospital, New Delhi)