Union health and family welfare minister Harsh Vardhan has approved the National Policy for Rare Diseases 2021, according to a statement issued by the health ministry on Saturday. The policy aims to bring down the high cost of treatment for rare diseases. Around 40 per cent of the population covered under the Pradhan Mantri Jan Arogya Yojana will benefit from the policy and financial assistance will not be limited to just the BPL families. Along with lowering the cost of treatment of rare diseases, the policy aims to increase focus on indigenous research and local production of medicines.

Those who are suffering from rare diseases (diseases listed under Group 1 in the rare disease policy) that require one-time treatment will have the financial support of up to Rs20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi. It will cover about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana.

LEARNING FROM HOME/ WITHOUT CLASSES/ BASICS

There are 7,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment. Rare diseases currently affect 3.5% – 5.9% of the worldwide population. Rarity and diversity is one of the criteria to define the disease. There is lack of scientific knowledge and quality information on rare disease.

These diseases have differing definitions in various countries and range from those that are prevalent in 1 in 10,000 of the population to 6 per 10,000. A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

India has said it lacks epidemiological data on the prevalence here and hence has only classified certain diseases as ‘rare. Where drugs are available, they are prohibitively expensive, placing immense strain on resources.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.70% of those genetic rare diseases start in childhood

Pradhan Mantri Jan Arogya Yojna(PMJAY)

A component under Ayushman Bharat, PM-JAY is the world’s largest health insurance/ assurance scheme fully financed by the government. It provides a cover of Rs. 5 lakhs per family per year for secondary and tertiary care hospitalization across public and private empanelled hospitals in India.

Over 10.74 crore poor and vulnerable entitled families (approximately 50 crore beneficiaries) are eligible for these benefits. PM-JAY provides cashless access to health care services for the beneficiary at the point of service, that is, the hospital. PM-JAY envisions to help mitigate catastrophic expenditure on medical treatment which pushes nearly 6 crore Indians into poverty each year. It covers up to 3 days of pre-hospitalization and 15 days post-hospitalization expenses such as diagnostics and medicines.