International Thalassemia Day was observed on Sunday across the country with Thalassemia Federation of Pakistan (TFD) in collaboration with Fatimid Foundation Lahore organised a seminar in connection with the day to raise awareness amongst general public, health care provider and decision makers to improve lives and well-being of Thalassemia patients.
According to a report, every year about five to six thousand babies are born with this deadly disease.
Such patients need regular blood transfusion and iron chelation after consultation with a qualified Hematologist along with regular diagnostic investigations on monthly basis, which is unaffordable by many families in the country.
The treatment of the disease is very long and painful yet it is very easy to avoid it if we declare Thalassemia ‘HB Electerophoresis’ test compulsory before marriages.
Cousin marriages are a major factor for higher thalassemia incidence in Pakistan and this can be reversed by enacting necessary legislation making premarital tests mandatory as is the case in many other countries including Saudi Arabia.
It is also for the people themselves to understand the importance of premarital tests to avoid the agony in future.
Several countries such as Iran, Cyprus, Italy and Greece had a much higher burden than Pakistan but they managed to successfully eradicate it from their society. These countries have not reported any new thalassemia major births for many years.
At the same time, these countries have developed excellent healthcare programmes for properly managing their existing thalassemia population. By emulating their preventive programme we can also achieve same results.
We will suggest that a technical advisory group be established which should lead national effort to prevent and manage thalassemia.
This platform should deliberate on developing a national narrative through consultations involving experts, NGOs, patients, parents and other stakeholders.
It should develop a consensus strategy to manage all aspects of this disease.
