National policy for rare genetic diseases formulated

On the whole, govt says that the policy seeks to strike a balance between the interest of patients of Rare Diseases and health system sustainability

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New Delhi: The Ministry of Health and Family Welfare has formulated a National Policy for the treatment of Rare Diseases in India to progressively build India’s capacity to respond comprehensively to rare diseases.

In her reply to specific questions on the floor of Parliament, the Minister of State (Health and Family Welfare), Mrs Anupriya Patel stated that the policy will be covering areas of prevention, awareness generation, training of doctors, funding support for treatment on the parameters to be defined by a Central Technical cum Administrative Committee, promotion of research and development for drugs for treatment of rare diseases and diagnostics at affordable prices and measures for making the drugs for rare diseases more affordable, strengthening of laboratory networks, development of Centres of Excellence etc.

A corpus fund at central level will be set up with the initial amount of Rs 100 crore towards funding treatment of rare genetic diseases.

On the whole, the Policy seeks to strike a balance between the interest of patients of Rare Diseases and health system sustainability. The Policy also recognizes and delineates the role of various Ministries and departments in the area of Rare Diseases.

Funding mechanism as given in the National Policy for the treatment of Rare Diseases in India is as under:

• Setting up a corpus fund at Central level with the initial amount of Rs 100 crore towards funding treatment of rare genetic diseases.

• Similar corpus at State level and contribution of funds by the Centre towards the state corpus to the ratio of 60:40 out of the central pool.

• It is up to the States to have a corpus of a larger amount. The requirement of funds by States is as per PIP process.

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