Thalassaemia-- A Silent Crisis Demands Urgent Action
As elsewhere across the globe, Bangladesh observed the World Thalassaemia Day on May 8. It is a stark reminder that we can prevent this preventable disease.
The country has already succeeded in controlling many infectious diseases. In spite of these successes, the health sector now faces burdens of such non-communicable diseases.
Among the diseases, the most commonly found genetic disorder — thalassaemia syndrome — will be a major public health problem in the coming days in the country.
According to World Health Organization (WHO) estimates, approximately three percent of the population (3.6 million) carry B-thalassaemia and four percent (4.8 million) carry haemoglobin E (HbE) genes in Bangladesh.
It is assumed that over 7000 children are born with thalassaemia each year in Bangladesh.
Medical experts have urged the government to develop a comprehensive national policy for the prevention and treatment of thalassaemia.
This includes setting up screening and treatment centres at district and upazila levels. Patients suffering from thalassaemia need comprehensive care which is severely lacking in our country.
Most of the patients do not have access to the required health service due to lack of awareness and economic constraints.
According to them, stem cell transplantation is the only curative therapy for thalassaemia. But lack of facilities, donors, expertise and expenses refrain patients from this approach.
Regular transfusion and chelation are the standard of treatment for transfusion dependent thalassaemia (TDT) patients and sometimes in non-transfusion dependent thalassaemia (NTDT) patients.
Besides, a good number of patients cannot have transfusions due to unavailability of blood.
Eighty-five percent of blood is contributed by friends and relatives, and 15 percent is donated by volunteers.
Another challenge is the standard blood transfusion centre. Many patients live in remote places. Even in upzila level, they do not have blood transfusion facilities.
Thus, the patients have to attend district or divisional hospitals for transfusion. But they cannot bear the expense. Safe blood transfusion is another difficult issue.
Patients have to be transfused improperly screened blood from many centres in emergency situations.
Due to lack of effective vaccine against HCV and to transfusion of improperly screened blood, higher HCV positive patients are found among multi-transfused thalassemia patients.
As there is no health care insurance at the national level, patients have to bear their own expenses.
However, national health insurance and subsidized or free treatment from government healthcare facilities will help them take proper treatment.
Despite all odds, measures must be taken to reduce the number of thalassaemic patients in the country.
The time for waiting is over. So, action taken today can save future generations from this lifelong, painful, yet preventable disorder.
