Extract from news report published in Times Of India
The Union health ministry has finally turned its focus on genetic blood disorders like sickle cell anemia, thalassemia and haemophilia. India will soon roll out a national programme to prevent and manage hereditary blood disorders (HBDs).
A registry of hereditary blood disorders will be put in place soon to give actual data. To provide comprehensive care service, including diagnosis and management of HBDs, 120 medical colleges/hospitals across the country will be strengthened to have in it a haematologist/ biochemist and a pathologist.
Molecular genetics laboratory will also be set up at 20 medical colleges that shall act as final referral centre for designated districts. These genetic laboratories will be developed in a phased manner with five new each year of the 12th Five Year Plan. In the first year of the plan, institutes like AIIMS, CMC Vellore, KEM Mumbai, PGI, Chandigarh, along with the one in Kolkata will be strengthened.
These institutes will also train gynaecologists/sonologists to conduct prenatal diagnostic procedures for prenatal diagnosis for hereditary disorders. The department of haematology at AIIMS will coordinate the quality control for the diagnosis of haemoglobinopathies.
"AIIMS and PGIMER, Chandigarh, and National Institute of Immunohaematology (NIIH), Mumbai, will serve as nodal training centres since these are already carrying out such comprehensive care. Counselors may be trained in the psychiatric department of different medical colleges (tertiary care centres). A fully-fledged DM (Clinical Genetics) programme may be developed at one of the tertiary care centres. An amount of Rs 25 lakh each year will be required for this scheme," said the report of the Planning Commission's working group on health for the 12th Plan.
According to the Commission, there are around 10,000-12,000 new thalassemia syndrome and 7,000-10,000 new sickle cell anemia patients added annually in India. Besides, there are around 1, 20,000 haemophilia patients of which 14,000 are registered. As the patients are mainly managed in bigger hospitals, this data from hospital and treating centres is an underestimate. Moreover, many patients of severe genetic disorders like hemophilia, B thalassemia and sickle cell anemia will survive to adulthood with availability of proper management and their number is likely to increase. "As these hereditary blood diseases are lifelong conditions and have many dimensions, management of these are best achieved with close co-operation with voluntary organizations/NGOs representing the interests of these patients in the society," the report added.