No money makes battle for life difficult

CHANDIGARH: Unable to bear the burgeoning treatment cost, 219 thalassaemic children registered with Thalassaemic Children Welfare Association (TCWA) are facing risk of life. TCWA works in association with thalassaemia ward of PGI’s Advanced Paediatric Centre.
Parents of the thalassaemic children, majority of whom belong to poor socio-economic strata, are finding it hard to bear the cost of repeated blood transfusions and medicines.
Besides, they are finding it difficult to arrange money for iron chelation therapy. The therapy is aimed at preventing iron accumulation in the body.
Speaking to The Times of India, SP Ajmani of TCWA said, "Unlike normal individuals, where the life of Red Blood Corpuscles (RBC) is about 120 days, in thalassaemics, it ranges between 40 and 50 days.
RBCs then disintegrate and become iron. To make up for this abnormal situation, a thalassaemic needs repeated blood transfusions at short intervals. Repeated blood transfusion raises iron levels in the body. To check this, iron chelation therapy is required."
In thalassaemics not receiving iron chelation therapy, accumulation of iron progresses steadily and when about 20 grams of iron has been deposited, severe clinical manifestations of iron loading are seen. The most common complications of iron overload are cardiac, hepatic and endocrinological disorders.
"The average cost of treatment in thalassaemia patients adds up to Rs 1 lakh per year. Most of the children registered with us belong to poor families, and it becomes extremely difficult for them to arrange for money required for treatment. Iron chelation therapy cannot be ignored, but the monthly cost works up to around Rs 2,000. Since our association is facing financial crunch, we cannot bear treatment cost of all children registered with us. If the children are not put on chelation therapy, they can face risk of life. Out of 320 thalassaemic children registered with us, 219 face risk of life. These children are from Punjab, Haryana, Himachal Pradesh and Chandigarh," observed Ajmani.
Accumulation of iron in the body leads to multiple complications. "These primarily include cardiac, hepatic and endocrinological disorders. Pathologic findings include thickened ventricular walls with particularly heavy iron deposits in the ventricles, epicardium, and papillary muscles. This might even lead to heart failure and life-threatening arrhythmia. In patients receiving transfusion, but not chelation therapy, symptomatic cardiac disease has been reported within 10 years of the start of transfusion.
The endocrine complications manifest in the form of stunted growth, delayed puberty, hypothyroidism and diabetes," said a senior PGI faculty member.
Iron-induced liver disease is another common cause of increased morbidity and mortality in these patients. Collagen formation and portal fibrosis have been reported within two years of initiation of transfusions, and if not prevented by effective iron chelation, this may lead to cirrhosis in the first decade of life.