The problem Waleed talks about is very real throughout Asia, and even today some remnants of this exist in the Mediterranean area. How do we get people to get tested without them worrying about being labeled with what has been called "the stigma"? I have heard this same thing from people in India. Some even object to our efforts to spread awareness because testing as a thal minor can limit one's marriage prospects.
Of course, we are not about to stop trying to spread awareness and educate the public, because rationally, this makes sense and avoiding it only leads to couples unexpectedly having thal major children. Testing will eliminate this. In places like Hong Kong and Cyprus, there has been tremendous success in eliminating the births of thal majors by testing before marriage. The evidence is there that testing works, but this success in smaller more controlled environments like these islands meets many challenges elsewhere. Even in the Maldives, where testing should have been able to greatly reduce the birth rate of majors, the results have been weak. There are cultural and even religious issues to deal with and I think in many societies, if it is to work, the clergy needs to be brought on board to the concept of testing for thal, and then work within the rules of their religions to help implement this policy. I do not believe we will make enough headway in creating awareness and acceptance of the idea, unless it can be done in accordance with the religions of the areas. The church helped with this in Cyprus, so it can be done. It has to be done because there has been a huge change in the world in the past 20 years in terms of availability of medical care, and babies that formerly would just die with no treatment are being transfused and surviving. The cost of treatment is more than most affected countries can absorb, so if we are going to do our moral duty and provide for those who need medical help, we are going to have to see a large decrease in the amount of thal majors being born every year worldwide. There is not enough money to treat all the thals in the world today, and there won't be tomorrow. In a new world that feels more obliged to fulfill its obligation to all people, thalassemia will create a monstrous financial burden. This will take an effort that coordinates government and religious leaders along with the leaders in the world of thalassemia. This is the effort in which TIF needs to be a leader and it should include all the local associations throughout the world. We are all doing our parts by spreading the word as much as we can here and elsewhere, and what Waleed suggests is a very effective "guerrilla" method that individuals and small groups can do that bring real returns and we all have to continue to work hard to help educate others and make people aware of the importance of testing. Even on the local level, people can talk to their clergy to find how the concept of testing can fit in with the tenets of various religions. All religions try to do what's best for the physical health along with spiritual health, so this should fit in everywhere once logic is applied.
Let's all continue our efforts.