I agree that TIF should be doing far more, but I also have to add that the problem of thalassemia is vast in Asia and as countries develop, we are beginning to see just how extensive the problem is. Whereas previously, most thals died at a very young age in these countries, with the new advances in treatment and the economic development of these countries takes place, patients are getting minimal care at the least, leading to patients surviving and creating a new demand for treatment. When you look at the scope of the problem and how many thousands of thal majors are born every year, we see that the only long term solution is testing and working towards elimination of thal major births. Some think this is harsh, but sometimes we need to separate ourselves from the emotional issues (I have talked to thals who are steadfastly opposed to trying to limit the births of majors) and look at this problem is a realistic manner. And once reality is introduced into this subject, economics has to be taken into account and frankly, the world cannot afford to take care of the amount of thal majors born every year. So either we say forget the poor, or we take responsibility and do everything we can to stress the importance of testing and even pass laws requiring it before marriage. It would really help if all thals themselves could get on board with this way of thinking.
The problem in Bangaldesh is immense. In addition to beta thalassemia, HbE beta thal is also prevalent. Bangaldesh is also one of the poorest nations on earth. We have to be very thankful for people like Dr Robin and his group. While Robin's family has moved to Canada and his sister has access to top notch treatment, Robin has chosen to remain in his native country to work with thals. He could easily follow his family to Canada and become a well off doctor, but he has chosen a path that is not about himself, but instead about others. I plead for anyone who has funds or materials and supplies to donate, to please contact the treatment center run by Robin. They need help. They are providing blood for patients but do not have the funding to provide chelators, supplies and other medicines. What we can each do, even if only in a small way, will help patients live. We also need to continuously stress these problems to TIF and all international organizations that can help.
Bappy, I have talked to Dr Robin and he does want to help you. Please call him as soon as possible.
For anyone wanting to help,
Contact: Riffat Laila
Administrative Coordinator
Address: 44/2 Chamelibagh, Shantinagar
Dhaka 1217
Bangladesh
Phone: +880 2 8332481
+880 119 084 0191
Email: info@thals.org
http://www.thals.org/en