It has proposed creating a funding mechanism through setting up a digital platform for individuals and corporate donors to contribute to the treatment cost of patients with rare diseases.
The decision comes as the government announces a new draft policy for the treatment of rare diseases, more than a year after it removed the earlier policy that promised an early corpus fund of Rs 100 crore for the treatment of patients with rare genetic diseases.
In its draft rare diseases policy 2020, the government has recommend a financial support of up to Rs 15 lakh under the umbrella scheme Rashtriya Arogaya Nidhi for those that require a one-time treatment.
The suitable choice is then to support those interventions that would provide more number of healthy life years for given sum of money while concurrently looking at the equity.
The draft of the proposed policy has been put up for comments on the health ministry’s website.
In the draft policy, the government has listed rare diseases in three categories grouping them depending upon their severity.
Few government hospitals like AIIMS, MAMC, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, Post Graduate Institute of Medical Education and Research, Chandigarh, Centre for DNA Fingerprinting & Diagnostics , Hyderabad and King Edward Medical Hospital, Mumbai are listed to be disclosed centre of excellence.
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