Question : GENETIC BLOOD DISORDERS

(a) the estimated number of children with genetic blood disorders like sickle cell anaemia, thalassemia and haemophilia in the country, State/UT-wise;

(b) whether the Government fras formulated guidelines for prevention and control of sickle cell anaemia, thalassemia and haemophilia;

(c) if so, the details thereof;

(d) whether the Government proposes to launch a programme for prevention and control of genetic blood disorders and compulsary check up for the purpose during the 12th Five Year Plan; and

(e) if so, the details thereof?

THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SHRI ABU HASEM KHAN CHOUDHURY)

(a): No country-wide or State-wise data on genetic conditions is maintained by Government of India. However, as reported by Indian Council of Medical Research (ICMR), there may.be 1 lakh thalassemics and the same number of sickle cell disease patients and about 65,000 cases of haemophilia in India. It is estimated that about 10,000 new thalassemia cases, 8000 new sickle cell anemia patients and 5000 new haemophilia patients are born each year in India.

(b) to (e): Government of India has no specific strategy for genetic counselling and treatment for genetic diseases. ICMR has taken the following initiatives:

(1) National Task Force studies have been carried out on hemoglobinoapthies.

(2) Micro and Macro epidemiologic data on these diseases has been developed.

(3) ICMR has helped to set up prenatal diagnostic facilities for

Haemoglobinopathies in 5 centres in the country in the States of Maharashtra, Gujarat, West Bengal, Karnataka and Punjab. Health is a State subject and the State Governments do provide health care through district hospitals, primary health centres and community health centres.