World Thalassaemia Day is observed on May 8 every year and the theme for this year is “Together for Thalassaemia: Uniting Communities, Prioritising Patients.”
Interacting with the patients brought to the fore how, although; recent treatments have extended patients’ life expectancy, they continue to face challenges that negatively affect the quality of life. thalassaemia significantly impacts patients’ lives, especially those with severe forms like beta-thalassaemia major, leading to physical, emotional and social challenges.
Patients said they were facing an array of problems, including the unavailability of medicines, schools shying away from giving admissions to students, no job reservation in the government sector and financial burden. Thalassaemia, which is a lifelong condition, requires constant medical care, including regular blood transfusions, iron chelation therapy and frequent health screenings. Despite the critical nature of the illness, there are significant gaps in the services provided, especially within the public health sector.
A thalassaemia patient, Suman, said patients required regular blood transfusions, but there was a shortage of Nucleic Acid Amplification Testing (NAT) tested blood at the Civil Hospitals due to which most patients suffered.
Well-equipped thalassaemia wards in all district hospitals, should be set up with a consistent supply of safe blood and iron chelators. “Iron chelators are essential to prevent organ damage caused by excess iron, such as heart or liver failure. These medications are often unavailable at civil hospitals, forcing patients to purchase them privately at high costs. The government should ensure a steady supply of these medications, including Defrijet 500mg, Defrijet 250mg, Kelfer 500mg, and Desferal 500mg,” she said.
A mother, who wished not to be named, said a prominent private school in the city denied admission to her son because he has Thalassaemia. “The word ‘diagnosed’ in the admission form triggered panic among the school authorities and admission was denied as they wanted to play safe and did not want a student with a lifelong disease in their school,” said she.
Due to their medical condition, thalassaemia patients often face difficulties in securing stable employment. “Thalassaemia is recognised as a disability by the government under the Rights of Persons with Disabilities Act. Yet we find it difficult to land a job in the government or private sectors. Regular appointments and check-ups mean that we have to frequently take time off work. Symptoms such as fatigue can affect performance, particularly in the week before blood transfusion, and this may need to be taken into account when assigning duties at work. The private sector out rightly refuses to hire us as they fear regular leaves for blood transfusion would affect the work,” said another patient suffering from thalassaemia.
“Despite the government’s promises to provide adequate health facilities, the reality on the ground is different. We urge the government to take immediate action to improve the functioning of public health services, ensuring that no patient is left without the care they need. Thalassaemia patients deserve a better quality of life and it is imperative that the government addresses these demands to ensure their well-being,” concluded a patient, Sukrit.
