Prevention and testing of people for Thalassemia carrier status is crucial to preventing birth of Thalassemic children, according to Dr Nita Munshi, President of Thalassemia Society, Pune Chapter, who is actively working towards Pune Zero Thalassemia births campaign.
Thalassemia Major is a genetic disorder which afflicts about 10,000 newborns each year in India. “Every week, 3-4 Thalassemia Major children are born despite this being a preventable disorder,” Dr Munshi told The Indian Express.
The rate of picking up a Thalassemia trait is 3 to 4 per cent, which means there would be at least 30 to 40 people who would have the trait among every 1,000 persons screened for the disorder. “Even if two out of these marry another person with the Thalassemia trait and get a child with Thalassemia major, can you imagine the burden on the family?” asked Dr Munshi.
A National Conference was organised in November to address various aspects of diagnosis, management and prevention of the disorder. Besides, several screening programmes have been undertaken at colleges; another one is planned next week at Indira College, Wakad.
Throwing light on the challenges children with Thalassemia face, Dr Munshi said that they need blood transfusions from the age of almost six months for life. “In addition, they need use of filters. Repeated blood transfusions lead to an increase in iron in the body organs for which they need to take expensive medicines,” Dr Munshi said, adding this can lead to medical, psychological, emotional, social and financial burden on the family.
The cost to maintain a child with Thalassemia Major is almost Rs 2 Lakh per year, which is unaffordable for many families. On the other hand, the cost of screening, which includes CBC + HB electrophoresis – a special test to detect if a person is a Thalassemia carrier, is Rs 1,400 to 1,500 in any private laboratory. Some laboratories also offer a special discount, bringing down the cost of the test to Rs 500.
“We plan to screen and test pregnant women, including in rural areas at primary health centres and at colleges. Ritu Chhabria and Mukul Madhav Foundation have been a great support for Prevention and Awareness drives,” Dr Munshi said adding that the target was to test at least 20,000-30,000 people over the next year. “So far, in the pre-Covid era plus last three months, we have addressed over 2,500 people and tested approximately 1,000 students and corporate staff,” Dr Munshi added.