Over 5,000 born with thalassaemia every year

Despite being a preventable disease, thalassaemia continues to spread in Bangladesh, with an average of around 15 children born with this blood disorder every day.

Thalassaemia is passed from parents to children and people with the disorder produce either no or too little haemoglobin. This could result in anaemia and leave patients tired, short of breath, and pale, as well as expose them to a lot of other ailments.

If both parents carry the gene for the disease, there is a risk that it can be passed on to the children, Prof Belayet Hossain, head of the haematology department at Bangladesh Shishu Hospital and Institute (BSHI), told The Daily Star.

On the eve of World Thalassaemia Day being observed today, Prof Belayet urged for a nationwide awareness campaign and mandatory screening for everyone before they get married.

The blood disorder cannot be cured through treatment, and its management is complex and costly as it requires lifelong blood transfusions and treatment.

The only cure is through a bone marrow transfusion (BMT), according to the Bangladesh Thalassemia Foundation, which also says that the required matched sibling donor for the procedure is available in only 1-2 percent of families.

Besides, there are significant mortality and rejection risks associated with the procedure, which is so expensive that most families cannot afford it.

According to the DGHS bulletin, over 5,000 affected children are born every year.

In order to survive, these children require regular monthly blood transfusions and chelation therapy to remove the excess iron from their bodies.

A large amount of money is required for each child's treatment.

"A health check-up for thalassaemia carrier status before starting a family can check the spread of the blood disorder. So, showing a screening certificate before marriage registration should be made mandatory," Prof Belayet Hossain said.

If two thalassaemia carriers do get married, they should think carefully about the impacts of starting a family. Knowing each other's status will help them make an informed decision, he added.

Even if they plan to give birth to a baby, they can know whether the baby will have thalassaemia through a test at the end of the first trimester, Prof Belayet said.

It is estimated that six out of every 100 Bangladeshis carry the gene responsible for the disorder, according to a health bulletin of the Directorate General of Health Services (DGHS).

A recent survey in 20 districts by the BSHI revealed that 10 percent of high school and college students are carriers of the thalassaemia gene.

According to Prof Belayet, there is a 25 percent chance that a newborn will suffer from lifelong thalassaemia if both parents have the gene.

In 50 percent of cases, the newborn will be a carrier of the gene like the parents, but will not suffer from thalassaemia, and in 25 percent of cases, the newborn will neither be a carrier nor suffer from the disorder.

"So, there is an urgent need to screen all young people," Prof Belayet said. "It is urgent to make people, particularly youths, aware of the dangers of thalassaemia."

Currently, a majority of the patients in Bangladesh do not get adequate treatment and the transfusion of safe blood has been a big problem. The majority of people suffering from thalassaemia are positive for infections such as hepatitis B, C, and HIV, according to the DGHS bulletin.

Considering the gravity of the issue, the health directorate undertook the "Thalassaemia Control Programme" in 2017.

Currently, free medicine and other tests are available at medical college hospitals in all eight divisional cities under the programme."Due to the Covid-19 pandemic, the thalassaemia control programme stalled. Now, we are trying to move forward with it," Sheikh Daud Adnan, director (hospitals and clinics) at the DGHS, told The Daily Star.