New Delhi: The Central government is set to launch a scheme to develop 12 indigenous drugs for eight rare diseases, health minister J.P. Nadda said on Monday. The programme aims to provide financial relief to many rare disease patients in the country.
“As part of India’s drive towards becoming a global leader in affordable healthcare, DHR is set to launch a programme developing 12 indigenous drugs for eight rare diseases. This initiative will aim to drastically reduce the cost of treatment for conditions like muscular dystrophy and Gaucher’s disease, making life saving therapies accessible and affordable for the masses,” said Nadda.
A health ministry official later listed the diseases as: Familial Duchenne Muscular Dystrophy (DMD), Familial Hypercholesterolemia, Spinal Muscular Atrophy (SMA), Gaucher Disease, Pompe Disease, Fabry Disease, Niemann Pick Disease (NPD) and Alkaptonuria.
Currently, the National Policy for Rare Diseases (NPRD) lists 63 rare diseases. Financial support is provided of up to ₹50 lakh per patient during the course of the treatment at centres of excellence (CoEs) for rare diseases.
Since the launch of the policy in 2021, approx. 1,118 patients have benefited under NPRD.
Health conditions classified under the policy are osteopetrosis that causes bone diseases; Fanconi Anemia that causes bone marrow failures, tumours and other abnormalities; Laron Syndrome that causes growth hormone insensitivity; and immune deficiency disorders such as severe combined immunodeficiency and Wiskot Aldrich Syndrome.
