List of orphan diseases in India
Though the percentage of patients suffering from ‘rare diseases’ in India is reportedly higher than the world average, even today such cases get little help from our government. Here’s why new regulations should be brought in place for treating orphan diseases.
According to experts, diseases manifesting patients representing maximum 6 to 8 per cent of the world population are defined as ‘rare diseases’ and most of such diseases are being ‘orphaned’ by the global pharma industry, mainly because of commercial considerations, are termed as ‘orphan diseases.’ Consequently, when any drug is developed specifically to treat an ‘orphan or a rare disease’ condition is called an ‘orphan drug.’
According to SanOrphan SA, Geneva, Switzerland, around 65 per cent of rare diseases are serious and disabling. More interestingly, about 250 new rare diseases are discovered each year, corresponding to five new rare diseases per week. However, without appropriate ecosystem being in place, developing a new drug (orphan drug) specifically to treat a small number of patient populations suffering from any particular type of rare disease through highly cost-intensive R&D initiatives, generating a low return on investments has been extremely challenging for any pharmaceutical company. Public awareness drives for ‘orphan diseases’ first originated in the USA with the formation of a rare disease support group representing around 200, 000 patients suffering from such ailments. However, very limited market especially for those ‘orphan drugs, ’ which are meant for the treatment of a single rare disease, has been discouraging the large pharma players to make major R&D investments for such molecules, as mentioned above. In response to the public awareness campaigns and realising the commercial imperatives of the pharma companies in developing ‘orphan drugs’, a path breaking legislation was formulated by the US government way back in 1983, known as the ‘Orphan Drugs Act (ODA)’. The key purpose of ODA was to incentivise R&D initiatives for such drugs to treat around 25 million Americans suffering from ‘orphan diseases.’ Though similar legal and policy interventions are of utmost importance to allay the sufferings of millions of patients fighting rare diseases in India, precious little has been initiated in this direction by the government, thus far. USFDA provides orphan status to drugs and biologics, which are defined as: Those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200, 000 people in theUSOr, those affect more than 200, 000 persons but are not expected to recover the costs of developing and marketing a treatment drug.
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