07 April 2010
By Prithvijit Mitra
Each will be given a card with details of their thalassaemia status so that they can try and avoid transmitting the disease to their children through marriage. Considered to be the most effective way of combating the genetic disorder, the ambitious five–year project is being launched jointly by at least four organizations, including the Rotary Foundation, Indian Council of Medical Research (ICMR), a cancer research institute with Kolkata Police as a partner. It will be flagged off on May 8 – the World Thalassaemia Day.
More than 2 lakh youngsters will have their blood tests done over the next five years. Those who take the test will receive a card which will state if the person is a thalassaemia minor (carrier), major (patient) or free from the disease. Around 80 colleges in Kolkata and its surroundings have been identified for the project. Students will first be made aware of the importance of taking the test through seminars and workshops. They will then be approached to take a blood test and given a card. It will soon be followed by awareness programs in schools and then in slums.
A recent survey by Indian Council of Medical Research (ICMR) – which is funding the project – says nine of every 100 people in Kolkata are affected by beta thalassaemia, which is considerably higher than other metros. In Delhi, Mumbai, Chennai and Bangalore, the percentage population affected by the disease was less than two. Smaller cities like Patna, Bhubaneswar and Guwahati, where the percentage is below five, are better off. More than 10 per cent of the population in West Bengal is believed to be affected, which, experts say, is alarming.
“The idea is to bring every youngster into the fold and make them aware of their thalassaemia status before they get married and have children. It is through marriage that the disease spreads and there can’t be a better way of curbing thalassaemia than making people aware. It might not wipe out thalassaemia overnight but will definitely bring down the number of patients in the long run,” said Debashish Mitra, chairman, Rotary International (District 3291) which is a partner in the project. Mooted by a senior researcher in Kolkata, the project plan will be chalked out this Friday in consultation with the Kolkata Police and other agencies involved. A private company will also be chipping in with funds for the gigantic project.
When two thalassaemia minors get married, there is a 4:1 possibility of their children being born with the disease. The same holds true for thalassaemia major couples. But the chances of offsprings inheriting the disease is uncertain, according to experts. “There are numerous instances of minor couples giving birth to three thalassaemic children in a row. The register should help to make a difference for Kolkata and south Bengal are among the worst affected regions in the country,” said Utpal Panda, secretary, Thalassaemia Society of India. “Kolkata has a large number of carriers who need to be cautioned,” said Satish Gupta, medical director, West Bank Hospital.
To begin with, 25,000 youngsters will be screened for the disease. The tests, to be conducted by a cancer hospital and a couple of other research organizations in Kolkata, could be over by the end of 2010. They will continue till 2015.
“We hope to be able to provide every Kolkata youngster with a card by then. By the next two years, we plan to expand the circle of operation and bring the adjoining districts into the fold as well and eventually the entire state,” said a researcher associated with the project.
Infrastructural deficiencies could, however, prove to be a stumbling block, felt some. “It would be difficult to screen a sizable section of the population with inadequate resources. No government hospital here has the facility yet and it could be difficult for a few private and semi–government organizations to carry out the tests,” said Panda.
- Thalassaemia affected in Kolkata: 9%(highest among metros in India)
- Thalassaemia affected in West Bengal : 10%
- Number of patients: No figure available
- Rate of growth in West Bengal and Kolkata: Around 5% over the last 10 years