NATIONAL POLICY FOR RARE DISEASES 2020
Context: The long-awaited draft of the National Policy for Rare Diseases 2020 was made public in January, 2020.
- The draft policy proposes to set up a registry under the Indian Council of Medical research (ICMR) to create a database and provide financial assistance of up to Rs 15 lakh to Ayushman Bharat beneficiaries for rare diseases that require a one-time treatment in tertiary hospitals only.
- The draft of the new policy has announced that the Ministry of Health and Family Welfare would provide financial support under its umbrella scheme Rashtriya Arogya Nidhi for treatment of those rare diseases that require a ‘one-time treatment’.
- While Rashtriya Arogya Nidhi is aimed at providing financial assistance to patients living below the poverty line, under the rare disease policy 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 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.
- It 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.
- Under the policy, the government plans to notify certain medical institutes as Centers of Excellence for Rare Diseases.
- To begin with, these will include Delhi’s All India Institute of Medical Sciences and Maulana Azad Medical College, Chandigarh’s Post Graduate Institute of Medical Education and Research, Mumbai’s King Edward Medical Hospital, Lucknow’s Sanjay Gandhi Post Graduate Institute of Medical Sciences, and others.
- It is said to be a watered down version of the earlier policy that was kept in abeyance, according to patients and caregivers.
- 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’s criticized for talking about Crowdfunding in a government policy.
- The scope of the draft policy proposed to limit financial support to patients suffering from only a few rare diseases categorized under Group 1, like osteopetrosis and certain immune deficiency disorders that can be cured with treatment, and certain diseases Tyrosinemia, Fabry’s disease and Maple Syrup Urine Disease, which require kidney or liver transplants.
- The draft policy cited lack of adequate resources for not providing financial assistance to rare diseases that require lifelong treatment.
- These diseases include Gaucher’s Disease, Hurler Syndrome, Wolman Disease, among others.
- Treatment for some of these diseases may vary from 10 Lakhs to more than 1 crore per year, with drug dose and cost increasing with age.
- Some health activists have also criticized the limited scope of the proposed policy saying that the entire policy is drafted to justify that govt cannot provide treatment due to high cost as it is resource constraint country.
- Some government hospitals are listed to be notified centre of excellence, but majority of severely compromised immunity patients cannot be taken to govt hospitals as they may acquire hospital contracted infections due to overcrowding and lack of hygiene and sanitation.
- The government should address the need for R&D for these diseases.
- In the US, the Orphan Drugs Act provides incentives to drug manufacturers to encourage them to manufacture drugs for rare diseases, and similar incentives are also provided in the UK and certain other developed countries.
- India has to learn from these initiatives.