Master In Current Affairs Magazine
Master In Current Affairs Magazine Published this article page no 43 Challenges in research and development The clinical explanation may be skewed or partial because of a very small pool of patients and lesser known pathophysiology natural history of these diseases. o Rare diseases are chronic in nature where long term follow up is particularly important. As a result they lack published data on longterm treatment outcomes and is often incompletely characterized. Challenges in treatment Unavailability of treatment as around 95% of them do not have any approved treatment. Only 300 therapies are available to treat them. o Prohibitive cost of treatment Due to lack of a significant market for drug manufacturers there is no incentive to develop drugs for them. For this reason rare diseases are also called orphan diseases and drugs to treat them are called orphan drugs. Salient Features of Draft Policy It lists 450 diseases as rare but does not provide a detailed roadmap on treatment. It creates three categories of rare diseaseso diseases requiring onetime curative treatment o diseases which need longterm treatment but cost is low 78 o diseases that require lifelong treatment and cost is high. Standardisation and monitoring National Registry for Rare Diseases will be created at Indian Council of Medical Research which will help to arrive at a definition of rare diseases best suited to India. Financial support for treatment Provide financial support to patients of rare diseases living below the poverty line under its umbrella scheme Rashtriya Arogya Nidhi. o It will also fund onetime treatment cost to the tune of 15 lakh for certain treatable rare diseases for patients under its health insurance scheme Ayushman Bharat Pradhan Mantri Jan Arogya Yojana which covers 40% of the population. o There is no clarity of Centre and State responsibilities and on category III patients Master In Current Affairs Magazine buy.
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