Explained: The Draft policy 2020 on rare diseases is far from reality and lacks genuine interest

New Delhi, Feb 18: The Government of India has put out the much awaited draft National Policy For Rare Diseases 2020 in public domain that proposes to provide up to Rs 15 lakh under its Rashtriya Arogaya Nidhi scheme for one-time treatment of rare diseases.

The Government decided to review the policy due to implementation challenges and in the light of new information and updates available/received for its further improvement and effective implementation.

The policy states:

• Financial support up to Rs. 15 lakhs under the Umbrella Scheme of Rashtriya Arogaya Nidhi (RAN) shall be provided 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.
• State Governments can consider supporting patients of such rare diseases that can be managed with special diets or hormonal supplements or other relatively low-cost interventions
• The Government will endeavor 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

The draft policy will also notify select government hospitals that provide treatment for rare diseases that include AIIMS, New Delhi, Maulana Azad Medical College, New Delhi, SGPGI in Lucknow, Post Graduate Institute of Medical Education and Research in Chandigarh and four others.

Rare diseases categorised under Group 1, such as Lysosomal Storage Disorders (LSDs), immune deficiency disorders, chronic granulomatous disease, osteopetrosis, Fabry's disease and liver or kidney transplant, will be funded under the scheme.

However, some experts note that the policy in its current form has been drafted based mostly on assumptions and does not address the real issues. The draft policy categorises rare diseases under three categories - disorders amenable to one-time treatment (curative), disorders requiring long-term or life-long therapy and incurable rare diseases that requires lifelong supportive care right from diagnosis that takes years in many cases and then the treatment if it is available, the medicines are among the most expensive in the world.

The draft policy again draws attention to the low allocation for India's healthcare policies that rarely see prevention of diseases, cure and aftercare as a whole.

It is estimated that about 70 million Indians are likely to be ­suffering from rare genetic diseases going by estimates of global incidence rates, but actual data pertaining to India isn't available. This includes a large collection of disorders-about 450 diseases considered rare globally have been recorded in India, many of them extremely rare and others less so.

The new policy is a step forward in that direction but the government needs much improvement and effective implementation.