Thalassaemia Major-Free Pakistan by the year 2025.

1. Know your thalassemia status
• All individuals who are or shall ever be in the reproductive phase (children) should have their thalassemia status checked by a simple blood test called hemoglobin electrophoresis. This is even more important if there is/was a family member with thalassemia minor/major. Since thalassemia status NEVER changes in life, it can be ascertained at capital ONE TIME at convenience, after the first sixth months of life.

• Those who are past the reproductive period need not get this test done

• All clinical laboratories and all thalassemia centers should offer this test at an affordable and subsidized rate as their moral obligation towards the society, the country and the mankind.

2. ß-thalassemia minors must not marry each other
Since ß-thalassemia major is the product of sexual contact between individuals with ß-thalassemia minor, it is an absolute must that carriers of ß-thalassemia gene should voluntarily decline marrying each other. Elders in the family should play their role to ensure compliance and enforce implementation.

3. Get antenatal diagnosis done
If marriage between two ß-thal. minors is inevitable (for social, financial or other reasons beyond control), the couple should not produce its own children; it should adopt. It this too is unacceptable, the status of the fetus (the unborn child) must be verified between the 10th and the 12th week of pregnancy. This is possible through a technique called antenatal diagnosis which is now available in Pakistan.

4. Decide on ß-thalassemia major pregnancy
Result of antenatal diagnosis for thalassemia status of the unborn in each pregnancy in such marriages shall statistically be as follows:

25% chance : normal baby (better than the parents)
50% chance : ß-thalassemia minor baby (same as the parents)
25% chance : ß-thalassemia major baby (the dreaded outcome; bad news for the baby, the family, the nation and the mankind)

Pregnancies in the first two situations should be allowed to proceed naturally. The third option shall produce a baby with ß-thalassemia major. To decide on the fate of such pregnancies is the prerogative of the parents and the family as a whole. To seek religious guidelines on this issue a copy of a fatwa from Maulana Taqi Usmani is reproduced at the back page. Decision may be made in the light of the contents of this fatwa. For further guidance parents are urged to consult other religious scholars while making a decision on the future of pregnancies which are likely to produce children with ß-thalassemia major.

5. Law to prohibit marriages between ß-thal.minors
Government should enact a legislation to make it mandatory for each citizen who is or shall ever be in the reproductive phase to have his thalassemia status defined. A certificate to this effect should be made a pre-requisite for admission to teaching institutions, NIC / driving license / passport / private and public employment and at the time of registration for marriage. Non-implementation/non-compliance or false certification should be declared a culpable offense against the society and the nation.