Jharkhand has anincidence rate of 8-10% for sickle cell anaemia and thalassemia that is double the national average and, is considered as anprevalent zone for these diseases. The state does not have a single haematologist or the required infrastructure to provide specialized care to patients of these blood-related diseases. The patients either have to get only average assistance or go to other states to get proper treatment due to the absence of specialized care.

State health secretary Nitin Madan Kulkarni has confirmed that the states does not have haematologists and mentioned it is due to the lack of seats in haemoglobinopathy courses. He said at present, the requirement is often looked after by specialists from various departments. Kulkarni also said that a proposal has been made to set up of a haemoglobinopathy department at the state run-super speciality hospital Rajendra Institute of Medical Sciences (Rims).

Dr Amar Verma, professor of paediatrics department at Rims, said that as Jharkhand happens to be an endemic zone for thalassemia, sickle cell anaemia and haemophilia, there is a need to set up a specialized department of haemoglobinopathy (a hereditary condition involving abnormality in structure of haemoglobin) in medical colleges with expertise manpower and state-of-the-art infrastructure so that they can screen and provide clinical assistance tosuffering people. Research work should also be started immediately to hold the risingincidence rate as it is a genetic disorder. But they don’t have dedicated labs to carry out medical examination on genetics or dedicated wards and skilled manpower at hospitals to treat such cases.

Experts said haemophilia, sickle cell anaemia and thalassemia are genetic diseases, which are inherited by children from their parents. Therefore, pre-natal screening of pregnant mothers could play anessential role in checking the spread of the diseases. Remarkably, a genetics lab was started in 2014 at Rims to carry out pathological investigations and for research work, but it is non-operational due to shortage of manpower.

Dr Verma, who was instrumental in starting the genetics lab at Rims to promote research in field of genetic diseases, said that he had taken the initiative as he had worked with lot with patients suffering with blood-related diseases but the laboratory stopped operations due to the lack of manpower.

Haemophilia Society, Jharkhand chapter, provides assistance to patients suffering from the haemoglobinopathy diseases, also said it has requested the state health department on many occasions to appoint lab technicians and haematologists in state but no action has been taken until now.

The society’s secretary, Santosh Jaiswal said that they have more than 50,000 recorded patients of thalassemia and sickle cell anaemia across the state. Also, 650 patients of haemophilia are registered with them. Patients suffering from these diseases do not get the required medical assistance as identification of such patients is adifficult task due lack of clinical experience among the doctors and they are often treated as normal patients. The state doesn’t have any haematologist who could sensitize doctors about the diseases.

Managing director of the state National Health Mission, Shailesh Chourasia, said that they do not have any idea about the issue. But, the state health department is working on an outsource programme which will provide a total solution to tackle sickle cell anaemia. They have started daycare centres in five districts for identification and are screening programmes at various levels.