Question : National Policy on Thalassemia

Will the Minister of HEALTH AND FAMILY WELFARE be pleased to state:

(a) whether the Government has prepared a Draft National Policy on Thalassemia;

(b) if so, the details thereof including the total number of patients in the country suffering from Thalassemia;

(c) whether there are 40 million carriers and over 1,00,000 Thalassemia majors under blood transfusion every month in the country and if so, the details thereof;

(d) whether preventive health checks being not in the norm in India leads to Thalassemia by unknowingly passing on this genetic disorder to their children; and

(e) if so, the details of the steps being implemented currently by the Government to further research on Thalassemia gene therapy in India?

ANSWER
THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND
FAMILY WELFARE
(SMT. ANUPRIYA PATEL)
(a) to (c): The Government has not prepared draft National Policy on Thalassemia.

The exact number of patients is not known. The estimated number of patients in the country is 100000 with addition of approximately 10000 new cases every year.

(d) & (e): Public health is a State subject. The Ministry has prepared and issued comprehensive guideline for Haemoglobinopathies (Thalassemia, Sickle Cell anaemia and other variant anaemia) for prevention and management of Haemoglobinopathies. The Guidelines provides for screening of every pregnant woman during ANC, pre-marital Counselling at the college level and onetime screening for variant anaemia for all children in class VIII. Awareness programmes on thalassemia are being conducted by several State Governments. So far the central Government has not initiated steps for research on Thalassemia gene therapy in India as per Indian Council of Medical Research.
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