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Prevalence of Thalassemia Major and Hepatitis C March 2013. In collaboration with Children’s Liver Foundation (Sukhbir Kaur) THINK Foundation (Vinay Shetty) Thalassemia and Sickle society, Hyderabad (Suman Singh ) DMC Hospital, Ludhiana (Ajit S ood)
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Prevalence of Thalassemia Major and Hepatitis CMarch 2013 In collaboration with Children’s Liver Foundation (Sukhbir Kaur) THINK Foundation (Vinay Shetty) Thalassemia and Sickle society, Hyderabad (Suman Singh ) DMC Hospital, Ludhiana (Ajit Sood) SGPGI, Lucknow (Shubha Phadke, Anjurani) Thalassemia Welfare Association, Chennai (Revathi Raj)
Thalassemia Major and Hepatitis C • Average carrier rate of thalassemia in India is 3%. • Approx 100,000 children with βthalassemia major in India • Estimated prevalence of HCV in general population-0.08 - 4 % • Thalassemia major patients is a high risk group on account of being multi-transfused • Mandatory testing of HCV was only implemented in 2001
Thalassemia Major and Hepatitis C AIM Prevalence of Hepatitis C in multi blood transfused patients of Thalassemia Major DATA COLLECTED FROM • THINK and Children’s Liver Foundation, Mumbai • Thalassemia and Sickle Society, Hyderabad • DMC Hospital, Ludhiana • SGPGI, Lucknow • Thalassemia Welfare Association, Chennai
TREATMENT OF HCV INFECTION • Poor documentation of treatment data • Few were tested for HCV RNA • Fewer were started with the treatment • From the data available significant drop in Hb, requiring increased transfusion rate and volume
In Mumbai • Earlier patients receiving transfusions in public hospitals in the city eg. St. George, KEM, Wadia, Sion Hospital • However most of these were unmonitored where patients went to the blood banks and receive transfusion • THINK Foundation set up 12 day care centre in Mumbai to facilitate transfusions, close to the residence and under medical supervision, with regular yearly screening for infections, monitoring chelation, growth etc • THINK Foundation - advocacy for NAT testing of blood which has been implemented in some Centres
Summarising…Thalassemia major and HCV infection • Overall reduction in HCV prevalence compared to a decade back • However, continuing infection despite mandatory testing • Higher incidence in North India compared to the rest of the country • Small proportion of patients receive treatment • SVR is better achieved with combination therapy of Pegylated Interferon with Ribavarin v/s Pegylated Interferon alone • Most patients are not adequately chelated; • Effect of chelation on treatment response needs to be studied • Need for overall focused care of thalassemic children including growth, iron overload related heart problems, infections and psychological problems