‘Draft of rare diseases 2020 policy is diluted version of older one’


Organisation for Rare Diseases India plans to file objections

The long-awaited draft of the National Policy for Rare Diseases 2020, which was made public this week, is nothing but a watered down version of the earlier policy that was kept in abeyance, said patients and caregivers in Karnataka.

The draft of the new policy has announced financial support of up to ₹15 lakh under the Rashtriya Arogaya Nidhi by the Central government for treatment of those rare diseases that require a ‘one-time treatment’.

“Beneficiaries for such financial assistance would not be limited to BPL families, but extended to 40% of the population who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana for their treatment in government tertiary hospitals only,” the policy states.

In addition, it has said State governments can consider supporting patients of rare diseases that can be managed with special diets or hormonal supplements or other relatively low-cost interventions, and mentions an endeavour to “create alternate funding mechanism” through setting up a “digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases.”

All of this is a diluted version of the older policy draft, said Prasanna Kumar B. Shirol, co-founder of the Organisation for Rare Diseases India (ORDI), an umbrella organisation that represents the collective voice of all patients with rare diseases in India.

Mr. Shirol said the new draft had left out the proposal to create a national and State level corpus with an initial amount of ₹100 crore towards funding treatment of rare genetic diseases. The earlier policy had further stated that States will have a similar corpus at the State level, and the Centre will contribute funds towards the State corpus in the ratio of 60:40.

“It does not even have what the earlier policy offered. How can you talk about crowdfunding in a government policy? We will definitely file objections to this. But all this is a delaying tactic to ensure that no help reaches our children,” he said.

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Printable version | Jan 20, 2020 3:37:36 PM |

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