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New tele-medicine concept launched to tackle sickle cell- 13-Jan-2014

Ahmedabad: A novel concept of providing medical facility over phone to families of newborns suffering from Sickle Cell Disease has been launched by the Indian Council of Medical Research (ICMR) here in co-ordination with the Gujarat government.

Sickle Cell Disease (SCD) is a hereditary disorder of heamoglobin (Hb), characterised by the presence of abnormal gene known as HbS, and is prevalent among the tribal population of South Gujarat.

At least 44 tribal families having newborns afflicted with SCD have been provided with mobile phones, NGO Valsad Raktda Kendra (VRK) Secretary Dr Yazdi Italia said.

"We don't have the accurate history of patients suffering from SCD as doctors don't have the exact statistics related to the disease. So, we joined hands with Children's' Hospital of Pitsburg and screened 5,000 new borns of which 44 were diagnosed with SCD," he said.

"We have handed the families of these newborns mobile phones so that they can call us in emergencies and take the medication at home itself. We will also call them and give them necessary instructions," he said.

According to ICMR-National Institute of Immunohaematology Director Dr Kanjank Ghosh, the present research project is to carry out clinical follow-up of newborns with sickle cell disease for five years of their life.

This kind of research project is being carried out for the first time in the country, Ghosh said, adding that on completion of the research, a natural history of sickle cell disease in India will be available.

SCD is commonly found amongst the tribal people from malaria endemic areas. South Gujarat tribal community is not an exception and is having high incidence of sickle gene, which ranges from 6 per cent to 34 per cent amongst different tribal communities with an average of 10 per cent amongst general tribal community.

Dr Italia, who is a pioneer of Sickle Cell programme, working on sickle cell anemia since 1978 and is one of the co-investigator of ICMR research project, said that all the tribal people are misdiagnosed and mistreated if their blood is not tested for sickle gene. Across the world, statistics suggest, close to 20 per cent people suffering from SCD die by the age of 20.

Looking at the high incidence of sickle gene and suffering of undiagnosed SCD patient, the state government, in 2006, had initiated Sickle Cell Anemia Control Programme (SCACP).

Valsad Raktdan Kendra (VRK), which has been working on Sickle Cell Anemia since 1984, was nominated as a nodal agency to implement the program in state government health services.

The PPP model has been very successful and the commissionerate of health was awarded Prime Minister's award for excellence in governance in 2012 for this Sickle Cell programme.

Eight million tribal people are being screened for sickle gene in Gujarat. Under the ongoing mass sickle cell screening programme, 40 per cent of tribal population has been screened and were given sickle cell status card. The remaining will be covered during next two years.