Living with thalassemia Political Economy

ustum Phullan, aged 20, blood group O positive, hails from Kalatuk, Turbat. Living with thalassemia since infancy, he has experienced the difficulties that accompany a lifelong medical condition, from regular blood transfusions and limited access to healthcare to the financial pressures placed on his family. Yet his story is also one of hope, faith and determination. Rustum's arrival in 2006 had brought great happiness to his parents and family. Like any parents, they had hopes for their son and wished to see him grow, receive an education and build a future. Living in a Baloch society where poverty, inflation and limited access to education have created significant challenges for many families, they hoped that their son would have opportunities they themselves had not been able to access. Their happiness, however, was short-lived. Around one and a half months after his birth, Rustum became seriously ill. His condition deteriorated to the point where he could barely open his eyes. His parents rushed him to Civil Hospital, Turbat, where doctors examined him. After a check-up, a doctor told his parents, 'His CBC is very poor. He needs blood.' Rustum was given a blood transfusion and his condition improved. But the transfusion was only the beginning of a lifelong medical journey. His parents later took him to Bantva Hospital in Karachi, where further tests were conducted. The diagnosis was thalassemia major. 'Your child has thalassemia major and needs lifetime blood transfusions,' his parents were told. For the family, the diagnosis brought a difficult new reality. Rustum would require regular blood transfusions throughout his life, along with medical care and medicines. For parents with limited financial resources, arranging that care became a continuing struggle. 'For every transfusion, my parents were hard put. Sometimes they asked some relatives for blood. On other occasions we went to hospitals and asked unrelated people to donate blood,' Rustum recalls. 'We did not always receive blood on time. Sometimes it took to three days before someone agreed to donate blood.' The lack of consistent medical care also caused complications. Rustum says that during the transfusions at Civil Hospital, Turbat, blood was not always screened. Over time, the transfusions resulted in iron overload, affecting his mobility and restricting his ability to travel. 'Blood was directly transfused into my body, due to which there was an iron overload. I was unable to walk long distances,' he says. The illness affected his education. 'I wished to study and go to school but there were times when I needed blood after every three to four days,' he says. Rustum remembers watching his parents struggle to provide for him. 'Seeing my parents suffering for me, I came to think that I shouldn't have been born. It is because of me that my parents can't have the happy life they deserve. There have been times when I thought that it was better to die than live a life that made my parents restless.' For his family, travelling to Karachi for medical check-ups was another financial burden. Rustum says the expenses came to Rs 70,000 to Rs 80,000 per month. The annual burden eventually reached Rs 200,000. They could no longer afford regular trips to Karachi. They continued arranging blood transfusions in Turbat but fell behind on other aspects of his medical care. Then came 2019. Rustum's medical files were kept at Civil Hospital. A man arranged tickets for them to travel to Karachi and appointments at hospitals. 'We moved to Karachi. The check-ups were done free of charge. After some days, we returned to Kech,' he recalls. The man behind the arrangements was social activist Irshad Arif. Rustum remembers what Arif told his family: 'From today, don't ask anyone for blood. Just come here.' That meeting became a turning point. Since then, Rustum has continued receiving blood transfusions through the Kech Thalassemia Care Centre. The centre also supported him when his health deteriorated again. After developing severe illness and diarrhoea, Rustum was taken to Karachi when treatment in Turbat failed to have an impact. He was admitted to Civil Hospital, Karachi. After prolonged treatment without sufficient improvement, the doctors advised his family to seek treatment elsewhere. His parents then took him to Dr Saqib Ansari at Children's Hospital, Karachi, where his condition improved. Rustum is grateful to Irshad Arif and the KTCC team. 'Sir Irshad is like a parent to me. He has cared for us,' he says. He says that the difference between Turbat and Karachi is not simply availability of blood, but consistent care. 'We get timely trnsfusions with proper blood screening. A transfusion costs Rs 5,000. The iron chelation medicines range from Rs 15,000 to Rs 30,000.' For Rustum, consistent treatment has brought stability to a life once dominated by uncertainty. Although his illness interrupted his education and restricted his mobility, he has developed an interest in small businesses and continues to think about building an independent future. Irshad Arif says Rustum's outlook has also inspired him. ' Rustum has a unique personality with an extraordinary mindset. He has been sharing original ideas in different situations despite being illiterate,' Arif says. 'Despite being a thalassemia patient, has the potential to inspire others with his business ideas. He is not just somebody living with a difficult disease; he is a visionary and an accomplished individual.' The KTCC Founded in 2019 by Irshad Arif, the Kech Thalassemia Care Centre in Turbat provides free blood transfusions, diagnostic testing, medicines and regular medical monitoring to children and families affected by thalassemia across Kech and Balochistan. The centre currently supports around 500 registered patients and has organised more than 600 blood donation camps. It also promotes thalassemia prevention and awareness through education campaigns and guidance on early screening. For communities such as Turbat, where access to specialised healthcare can be limited, such services can be particularly important. Supporting blood donation programmes and raising awareness about thalassemia can help patients receive treatment while also contributing to prevention. Prevention begins before marriage. Hb electrophoresis testing can help identify the haemoglobin disorders and carrier status. Appropriate screening before marriage can help couples understand their carrier status and make informed decisions about their children. Rustum's life has been shaped by thalassemia since infancy. The condition interrupted his education, restricted his mobility and placed a significant burden on his family. For years, arranging the vital transfusions was a struggle. Today, he continues to live with the condition and the treatment it requires but his life is no longer defined by his illness alone. He has ambition, ideas and plans for his small business. He has learnt to look beyond the uncertainty that once defined much of his childhood. The writer is a freelance journalist based in Turbat