Key Points
New Delhi: The Union health ministry is working on a Rs 900-crore mega initiative to procure high-value drugs in bulk for some rare diseases, which can be life-threatening and chronic, and medicines for which are prohibitively expensive, ThePrint has learnt...
The first-ever plan of its kind has been devised following a nudge by the Delhi High Court to ensure that when patients contract rare diseases for which drugs are available, they are not denied treatment, and they can effectively reap the benefits of the Centres National Policy for Rare Diseases, 2021...
Following recommendations by a high-level committee chaired by Dr Rajiv Bahl, director general of the Indian Council of Medical research (ICMR), the government negotiated with a few multinational drugmakers to procure bulk drugs for some priority rare diseases at lower rates, senior officials in the health ministry told ThePrint...
Senior government functionaries have also acknowledged that it is a worrying fact that few patients, compared to the large number of rare disease patients in need of crucial and innovative therapies, are receiving help.. we realise that even this (the financial aid for rare disease patients) is not sufficient as we dont want to leave any patient behind, L Swasticharan, additional deputy director general of the directorate general of health services in the health ministry, had said last month during the National Conference on spinal muscular atrophy organised by CureSMA...
Health ministry officials quoted earlier said the plan on bulk procurement of drugs for rare diseases would be rolled out this year after finalising the blueprint on how the drugs will be disbursed to needy patients...
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