Q) A multi-stakeholder consensus, across sectors, regions and political affiliations needs to emerge to tackle this invisible yet urgent public health concern. In this context, critically examine the policy on rare diseases in India.
Why this question
Delhi HC has set up a panel to find ways to treat patients with rare diseases.
Key demand of the question:
Prevalence of rare diseases in India, policy to deal with it and major challenges associated with it.
Critically examine- Look in close detail and establish the key facts and important issues surrounding the topic. Try and offer reasons as to why the facts and issues identified are most important, as well as explain the different ways they could be construed.
Briefly give an overview of rare diseases.
In the first part, highlight the prevalence of rare diseases in India and policy to deal with it.
In the next part, give a list of concerns associated with the policy and challenges ahead in the process of fighting rare diseases.
Conclude with a way forward.
The World Health Organization (WHO) defines a rare disease as an often debilitating lifelong disease or disorder with a prevalence of 1 or less per 1,000 population. According to the Indian Council of Medical Research (ICMR), it is one in 2,500 people or less.
Policy in India
Recently, the Union Ministry of Health and Family Welfare has published a national policy for the treatment of 450 ‘rare diseases’. As per the policy, out of all rare diseases in the world, less than five per cent have therapies available to treat them. In India, roughly 450 rare diseases have been recorded, of which the most common are Haemophilia, Thalassemia, Sickle-cell anemia, auto-immune diseases, Gaucher’s disease, and cystic fibrosis. Statistics show that India has close to ~50-100 mn people affected by rare diseases in a population above 1.3 bn people and almost 80% of these are children.
Key Features of the Policy:
- It provides for lowering the incidence of rare diseases based on an integrated preventive strategy.
- It aims to provide access to affordable health care to patients of rare diseases which are amenable to one-time treatment.
- Crowd funding for treatment of high-cost rare diseases: If the government cannot fully finance the treatment, donations from prospective individuals or corporate donors who are willing to support can be sought.
- For the purpose of the policy the term rare diseases is categorized into 3 groups: requiring one-time curative treatment, diseases that require long-term treatment but where the cost is low, and those needing long-term treatments with high cost.
- Financial support: A maximum of ₹15 lakh could be provided to each patient under the umbrella scheme of Rashtriya Arogya Nidhi and the beneficiaries would not be limited to families below the poverty line.
- It aims to create a patient registry for diseases housed in Indian Council of Medical Research (ICMR).
- The lack of an Indian centralized clinical registry of rare disease patients results in some patients taking up to seven years to be diagnosed accurately.
- The socio economic burden of rare diseases is immensely high.
- The draft in existence has mentioned that financial assistance will be provided for rare diseases that run up to Rs 15 lakh but only to those patients that have curative therapy and fall under Rashtriya Arogya Nidhi scheme of PMJDY.
- At the diagnosis and treatment level, the policy should address physician training, availability of affordable diagnosis, standard treatment protocols, and availability of drugs to reduce the rare disease burden.
The State has the duty to provide affordable, accessible and quality health care to all its citizens and the National Policy for Rare Diseases is a great step in this regard. However, there have been certain concerns regarding the policy such as cap on amount for treatment at Rs.15 lacs, crowdfunding which can create delays in treatment, lack of effective implementation guidelines for the Centre and the states, etc.
Although the proportion of rare diseases is much less than the other diseases, it does not reduce the importance of the life of a person affected by rare diseases. Thus national policy would remove this adverse distinction and would make government committed equally to all people.