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Govt declares ‘one-time financial assistance’ for Rare diseases

Topics Covered:

  1. Issues relating to development and management of Social Sector/Services relating to Health, Education, Human Resources.

 

Govt declares ‘one-time financial assistance’ for Rare diseases

 

What to study?

  • For Prelims: What are rare diseases?
  • For Mains: Need for awareness, international cooperation in this regard, need for a policy on this.

 

Context: Government has announced a ‘one-time financial assistance’ for Rare diseases. The standing finance committee has approved a proposal for adding a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) for provision of one-time financial assistance to those below threshold poverty line for specified rare diseases which require one-time treatment.

 

What is a rare disease?

A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.

Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear. In Europe a disease or disorder is defined as rare when it affects less than 1 in 2000 citizens.

  • Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis.
  • The most common rare diseases recorded in India are Haemophilia, Thalassemia, sickle-cell anaemia and primary immuno deficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.

 

Need of nationwide policy:

  • State has responsibility for providing affordable, accessible and reliable health-care services to every citizen. In fact constitution also mentions importance of health-care services under articles like 21, 38 and 47 and thus state cannot evade this responsibility under the pretext of non-justifiability of articles.
  • Given the low volumes at which the drugs needed to treat such diseases would be consumed, pharmaceutical companies have little commercial incentive to produce them. Thus, a nationwide policy on orphan drugs could incentivize these players.
  • Even if pharmaceutical companies are incentivized to develop drugs to treat rare diseases, pharmaceutical companies remain beholden to the laws of economics and, given the low demand for orphan drugs, price these drugs as high as they choose to. Hence there has to be regulation of the government in restricting the exorbitant prices of the drugs.
  • Although proportion of rare diseases is much less than the other diseases, it does not reduce the importance of the life of person affected by rare diseases. Thus national policy would remove this adverse distinction and would make government committed equally to all people.

 

Sources: Down to earth.

Mains Question: What is an orphan drug? It is said that there is a need for a nationwide policy on the treatment of rare diseases that incentivizes the development of orphan drugs. Elaborate.