BENGALURU: Among the vast number of communities in India, those which have high carrier rate for Thalassemia from Karnataka, include Gowdas and Lingayats, said a delegate at the International Workshop on Prevention and Management of Haemoglobinopathies and Haemophilia held here on Thursday. It was attended by the representatives from SAARC countries. The two-day workshop concluded on Friday.
Since inter-caste marriages are uncommon in these communities — like Sindhis and Punjabis in the north — parents who are thalassemia minors tend to have children who become thalassemia majors. In India, 10,000 thalassemia major babies are born every year.
Dr Rahul Bhargava, director, Hematology, Fortis Memorial Research Institute, Gurgaon, and member of the committee that drafted rules for the implementation of the Rights of Persons with Disabilities Act, during his presentation said, "There are communities in Madhya Pradesh, Karnataka and other states where Thalassemia carrier rate is high. Since inter-caste marriage is uncommon in these communities, their children end up being born Thalassemia majors. Awareness, pre-marital counselling and screening are key."
Other experts said unlike haemophilia and sickle cell anaemia, thalassemia is completely preventable. "In one country, thalassemia drastically came down and this happened merely by relentless awareness and education programmes. One doesn't require expensive bone marrow transplants or gene therapy. Just education and it is totally preventable," a delegate said.
Dr Rathan Kelkar, director, state National Health Mission, said, "We have 1,900 thalassemics in our registry. But then only 20 per cent are diagnosed, the rest may not even know their carrier status. While we have got Rs 5 crore from NHM last year, we got an additional Rs 6 crore from the state government. This year, we are pitching for Rs 25 crore because our expenditure has been good."
"We need more manpower in the Centre for Excellence for Treatment of Blood Disorders and Haemophilia at Victoria Hospital. Also, we need more High-Performance Liquid Chromatography machines used for testing thalassemia which costs at least Rs 50 lakh," he said.