Battling thalassemia

Cultural norms, stigmatisation of healthcare procedures and a lack of awareness are exacerbating problem

Thalassemia poses a significant health challenge in Pakistan primarily due to the high prevalence of consanguineous marriages. This inherited blood disorder manifests in children when both parents carry the recessive or mutated gene, impairing the natural production of haemoglobin — a crucial oxygen-carrying pigment within red blood cells. Consequently, affected children develop severe anaemia, which can be life-threatening if not addressed promptly. Resistance to genetic screenings and pre-marital tests has further compounded challenges associated with the disease.

In 2009, a law was enacted in Khyber-Pakhtunkhwa mandating thalassemia testing for married couples. According to the law, the marriage registrar must ensure that the thalassemia test is conducted when the couple signs the marriage certificate. Unfortunately, more than a decade later, the province still grapples with the prevalence of the disease. As many as 40,000 people in K-P are critical patients. The disease also affects individuals in other parts of the country, particularly in Balochistan. The inaction of both federal and provincial governments has worsened the emergency. In K-P, government hospitals lack the necessary infrastructure to provide modern treatments such as bone marrow transplants. Meanwhile, in Balochistan, the majority of hospitals struggle to provide even blood transfusions to patients.

Cultural norms, the stigmatisation of healthcare procedures and a lack of awareness are exacerbating the problem. It is high time for relevant authorities to intervene and address this growing emergency. In addition to ensuring the effective implementation of enacted laws in K-P, provincial health authorities should engage with tribal communities, clerics and community leaders to underscore the importance of pre-marriage testing. Similarly, other provincial governments should also enact laws mandating testing. The healthcare sector needs to intensify efforts by investing in treatment methodologies and ensuring that these treatments are both available and accessible to the most vulnerable. Healthcare authorities and other relevant bodies must not play with people’s lives; they should address this challenge promptly.

 

Published in The Express Tribune, December 11^th, 2023.

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