India launched a registry of rare disease patients in 2017 but it is far from complete. Unlike the US, which has economic incentives for pharmaceutical companies under the Orphan Drug Act (to encourage development of drugs for diseases too rare to be worth pursuing otherwise), the Indian government does not offer such provision.
Owing to countless generations of consanguineous and endogamous marriages – within extended families or within the same caste –that raise populations’ vulnerability to genetic disorders, the prevalence of rare diseases may be higher in some Indian ethnic groups. Newborn screening could diagnose many disorders at birth, since 80% of rare diseases are genetic. But barring a few Indian states, it is unavailable in government-run hospitals, where, in 2018, almost 55% of women gave birth.
DNA Explainer: All about world s most expensive drug Zolgensma which costs Rs 18 crore a dose
The virus used in Zolgensma gene therapy works as soon as it is introduced to a patient, their body starts to produce antibodies. (Image Source: Twitter)
Updated: Mar 10, 2021, 05:11 PM IST
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The life-changing drug Zolgensma , considered the world s most expensive drug and approved by the United Kingdom s National Health Service (NHS) to cure a rare genetic disorder has gone viral.
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Patient advocacy groups seek more funds for treatment of rare diseases
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‘Focus on research will help to cut the cost for healthcare systems’
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‘Focus on research will help to cut the cost for healthcare systems’
On Rare Diseases Day which fell on Sunday, stakeholders demanded more funds for treatment of patients afflicted with known rare diseases, besides more research.
According to the Indian Society for Clinical Research, there are 7,000 known rare diseases that have affected 300 million people across the globe. Of them, 70 million are in India, and most have no or very limited treatment options.
Society president Chirag Trivedi said one in 20 persons would live with a rare disease at some point in life. A large number of patients had no access to appropriate diagnosis or treatment. “This should be a wake-up call for clinical researchers,” he said. Focus on research could reduce the cost for healthcare systems and improve the qua