ISLAMABAD: As World Thalassemia Day rolls around again this year, the national coordinator of the Safe Blood Transfusion Programme (SBTP) told Dawn that a policy draft for a Thalassemia policy is being prepared, and could take four months to complete.

Without a policy, it is difficult to undertake efforts to prevent the disease.

There are three kinds of thalassemia, thalassemia major, thalassemia intermedia and thalassemia minor. Someone diagnosed with thalassemia major would suffer with the disease for life, while someone with thalassemia intermedia could get thalassemia major at any time. Someone with thalassemia minor will have a normal life, but could transmit the disease to their offspring.

Because of thalassemia, the body stops making red blood cells and patients require blood transfusions. The only cure for the disease is a bone marrow transplant, which is not very expensive but requires a donor.

Official says policy draft could take four months to complete

The disease can be detected through a blood test, and a patient requires medication that can cost thousands of rupees a month, and also requires blood transfusions around twice a month.

Because the treatment is expensive, many believe pre-emptive measures, including legislation and awareness raising, could control the spread of thalassemia.

According to estimates 5,000 children are born with thalassemia major every year.

A doctor from the Pakistan Institute of Medical Sciences (Pims) said that both the government and the private sector have been working to provide relief and treatment to thalassemia patients.

“However, no steps have been taken for preventive measures. Prevention is the easiest and most cost-effective method against thalassemia. It’s simple, [if both parents have thalassemia minor, they] may have children who have thalassemia major,” he said.

“Couples should get tested before planning to have children; because once they have a child with thalassemia their lives will become very difficult. They will spend all their life getting treatment and arranging blood for the child,” he said.

SBTP national coordinator Dr Hasan Abbas Zaheer agreed that most of the work being done on the disease in Pakistan focuses on treatment rather than prevention.

“However a policy draft is being made in which SBTP has been taking leading role, the World Health Organisation (WHO) has been supporting and Thalassemia International Federation has been encouraging us,” he said.

“It will take four months to complete the draft of the policy. The draft will give its recommendations for what kind of legislation should be made, how patients should be regulated, what the communication strategy should be, how blood transfusion should be ensured,” he said.

“Moreover the policy will also give its recommendations on prenatal diagnosis of the disease and what kind of steps should be taken to increase awareness in the society to prevent the disease,” he said.

“A number of seminars have been held in which opinion from experts, researchers and patients have been sought. The policy will have input from all the stakeholders and it will give proper and concrete recommendations,” he said.

In response to a question Dr Zaheer said that Pakistan has a huge thalassemia burden; more than 100,000 estimated thalassemia major patients require monthly blood transfusions for their survival.

Published in Dawn, May 8th, 2016