ISLAMABAD: World Thalassaemia Day will be observed across the country on Monday and once again, the health ministry will face criticism for the country not having a thalassaemia policy for the prevention of the illness.

Pre-emptive measures including legislation can control the spread of thalassaemia, cases of which have been increasing. According to some estimates, about 5pc of the population, which is 10 million people, are carriers of the illness and some 5,000 children are born with thalassaemia major each year.

Talking to Dawn, Safe Blood Transfusion Programme’s national coordinator Dr Hassan Abbas Zaheer said the country does not have a thalassaemia policy nor is there a platform for it at the federal level.

He suggested the private sector be involved in the finalisation of a policy. He said the government can also establish a committee of experts to draft a policy.

An estimated 10 million people in the country are carriers of the debilitating disease

“Once a policy draft is prepared, recommendations will be given on what kind of legislation should be done, how patients should be regulated, what the communication strategy should be and how blood transfusions should be carried out,” he said.

Dr Zaheer added that the policy will also make recommendations on prenatal diagnosis and what steps to take for raising awareness about it.

It should be decided if the eradication of thalassaemia is a priority, he said.

There are so many thalassaemia patients in Pakistan and more than an estimated 100,000 patients require monthly blood transfusions, he added.

Pakistan Institute of Medical Sciences media coordinator Dr Waseem Khawaja said the government and private sector in Pakistan have been working for providing relief and treatment to thalassaemia patients.

“However, no steps are taken for preventive measures though it is easier and more cost effective than treatment. It is simple, if a husband and wife are both carriers- if they have thalassaemia minor- their children may have thalassaemia major,” he said.

He suggested couples get tested before they plan to have children and stressed on the importance of raising awareness about the disease.

Thalassaemia patients are given periodic blood transfusions as their bodies stop producing red blood cells.

The only known cure is a bone marrow transplant which requires a donor and is also expensive.

The disease is diagnosed with a simple blood test and patients have to take medicines worth thousands of rupees and regular blood transfusions.

There are three types of thalassaemia- minor, major and intermedia. Patients with thalassaemia major suffer from the illness throughout their lives and need treatment throughout, those with thalassaemia intermedia can contract the illness at any time and those with thalassaemia minor do not have symptoms but are carriers of the illness, which they can transmit to their children.

Published in Dawn, May 8th, 2017