Khyber-Pakhtunkhwa tops in thalassaemia cases compared to other provinces

The Express Tribune

Khyber-Pakhtunkhwa (K-P) has the most cases of thalassaemia, a genetic blood disorder, compared to other provinces and experts say marriage between first cousins is to blame.

Speaking at the Peshawar Press Club on World Thalassaemia Day (Thursday), founder and Chairman of Hamza Foundation Ejaz Khan demanded the Pakistan Tehreek-e-Insaf (PTI) led government implement an existing legislation to contain the spread of the disease. According to the foundation, a charitable organisation that aims to raise awareness about thalassaemia in Pakistan, anywhere between 5,000 and 8,000 children are born with thalassaemia annually, and more than half of them are from K-P. Hamza Foundation Welfare Hospital and Thalassaemia Control Programme hosted the event and speakers used the occasion to talk about the progress made in available treatment and how easily the disease can be prevented if people – especially first cousins – get tested before getting married.

Thalassaemia is a blood disease that surfaces during early childhood. Children suffering from the illness lose their appetite and cannot sleep, vomiting frequently. It is a genetic condition passed on from parents to their children, and the chances of transmission can be detected by a simple blood test.

The provincial assembly passed the K-P Preventive Health Bill in 2009, making it mandatory for couples to get tested for thalassaemia and Hepatitis C before getting married. Though the law does not ban couples from getting married based on the results, it gives them the option of protecting their future offspring from inheriting the disease.

Khan said a majority of the children treated at the foundation need fresh blood every 15 days because their bodies have stopped producing red blood cells. Permanent treatment is a bone marrow transplant, which costs at least Rs2 million, he said.

“99% patients belong to very poor families and they cannot afford this treatment,” Khan added. To contain the spread of thalassaemia, his foundation is advising those families with a history of the blood disorder to undergo a Chorionic Villus Sampling (CVS) test after three months of pregnancy, which detects complications with the fetus. If the test returns positive, doctors suggest abortion as a safer option.

On the upside, the foundation recently began treating thalassaemia patients with medicines instead of blood transfusions. Cheap and easily available at pharmacies, the tablet is a much needed relief for low-income patients compared to expensive blood transfusions.

Khan said legislation calling for genetic screening before marriage, or keeping a record of cousin marriages, have been passed in Iran, Malaysia, Saudi Arabia and Cyprus. Because of this, many families today are protected from genetic diseases including thalassaemia. “The K-P government should properly implement the existing law across the province,” Khan said.