Calling it just another piece of paper that is far from reality, groups working in the area of rare diseases in India have said that the National Policy for Rare Diseases-2020, released recently by the Union Health Ministry, is nothing more than “an illusion”. It also offers no clarity on long-term financial assistance, they said.
The government, in its policy paper, has proposed financial support of up to ₹15 lakh under an umbrella scheme of the Rashtriya Arogya Nidhi for those rare diseases that require a one-time treatment. Beneficiaries for such financial assistance would not be limited to Below Poverty Line (BPL) families, but extended to 40% of the population eligible as per the norms of the Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.
It has also proposed that the Government will “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”.
For prevention and control, the Ministry has noted that it will work at encouraging people to seek pre-marital genetic counselling, identification of high risk couples, and create awareness about early detection rare diseases.
“The 2017 policy on rare diseases had proposed a ₹100 crore corpus fund allocation for the treatment of patients with rare diseases, which was a Centre-State partnership of 60:40, with each State forming a technical committee to evaluate patients’ applications. That has come down to ₹15 lakh support for diseases needing one-time treatment. Clearly, now, after a major lag, the policy has come with no hope in sight,” noted a release from the Lysosomal Storage Disorders Support Society.
‘Far from reality’
The society’s president Manjit Singh said, “Policy 2020 is far from reality and lacks genuine interest in providing much-needed treatment to ‘treatable’ Rare Diseases.”
Prasanna Shirol, founder of the Organization for Rare Diseases India (ORDI), said that the policy is a “plain mockery of the situation of patients”, and that proposed solutions such as the creation of a digital platform for crowd funding were not reliable. “How can you design a policy by the government based on donations? The policy is just another document without much substance,” he said.