Courtesy by: indianexpress.com
Almost a decade ago, the Baroda Medical College (BMC) became the first institute in the state to initiate research on the genetic disorder of sickle cell anaemia, which has affected a huge portion of tribal population in Gujarat. But in the past four years, the medical college has seen a complete stagnancy with no research proposals in line.
In a five-year project of the Indian Council of Medical Research (ICMR), between 2000 and 2005, the BMC had initiated the project of sickle cell anaemia and Thalassemia screening in antenatal and college students.
The project was jointly funded by ICMR and the state government with Rs 75 lakh for the project and Rs 50 lakh for the infrastructure development of genetic laboratory.
However, after completion of the project, the BMC had proposed to carry out a second phase of the same project focusing on the prenatal diagnosis of sickle cell anaemia and Thalassemia. “Since this is a genetic disorder, there is a 50 per cent chance of passing on of the disease to the progeny. The aim of the project was to study the prevalence of sickle cell at the foetus level so that the genetic disorder can be detected and stopped before the birth of the infant,” said Dr R Z Patel, retired associate professor of the Pathology Department, BMC.
Four years after the proposal for the second phase, the BMC is still waiting for funds and the laboratory awaits further researches on sickle cell anaemia. Interestingly, while Vadodara district was the first to carry out research, the screening in the tribal region started only in February this year. However, screening in south Gujarat had started much ahead in 2003.
“Over 3.15 lakh tribal population has been screened in Central Gujarat. The prevalence of sickle cell anaemia trait in Vadodara, Narmada, Dahod and Bharuch is between 14 and 17 per cent; while in Panchmahals, Sabarkantha and Banaskantha the prevalence is between 10 and 15 per cent. Over 0.2 per cent of the population is the carrier of sickle cell disease,”
said Prakash Parmar, project coordinator of Sickle Cell Anaemia and Thalassemia, Indian Red Cross Society (IRCS) Ahmedabad. The IRCS is carrying out screening of the tribals in the age group of 6 years and 30 years.
Research is not the only area of concern. With the understaffed primary and community health centres in the tribal regions, the patients hardly receive timely and proper symptomatic treatment.
“We generally depend on the health workers in the region to distribute iron folic acid among the patients. In sickle cell anaemia crisis stage, patients are brought to the city-based hospitals. However, though counselling forms the major part of the prevention process, there is a dearth of counsellors in the districts. There is only one counsellor in four tribal districts of Vadodara,” said Dr Vijay Birla, sickle cell anaemia project coordinator, District Health department, Vadodara.
Dr Jayanti Patel, founder of Late Shree Ramjibhai Chaudhari Sickle Cell Anaemia Foundation, Bardoli, said, “Gujarat has over 80 lakh tribal population. Of which, over 28 lakh population is likely to have sickle cell anaemia traits and two lakh are sickle cell carriers. But due to mismanagement and ignorance on the part of the society and doctors, 7 to 10 patients die every day.”
He added: “In all the screening facilities, children till the age of 5 years are not screened properly and so the disease is hardly detected early which keeps them out of early medication as well. The health workers and primary doctors do not have proper understanding of the disease, because of which most of the symptomatic treatment and diagnosis lacks precision.”