HC: It’s time govt revised ₹1K aid for rare disease patients
Times of India | 14 September 2024
Kolkata: The Calcutta High Court on Thursday pointed out that it was high time that the state revised the amount of Rs 1,000 allocated to every person suffering from muscular dystrophy, a rare genetic disease that causes progressive muscle weakness and breakdown. The counsel representing the state is awaiting instructions on the same.
The amount of Rs 1,000 was disbursed to these persons following an order passed by the state govt in 2020.The high court, in their earlier order, said the amount was “grossly insufficient” to meet medicine expenses. The division bench of Chief Justice T S Sivagnanam and Justice Hiranmay Bhattacharyya had directed the state to inform the public of the amount paid to such persons.
It was submitted that Andhra Pradesh is paying Rs 15,000 per person per month for this. Petitioner’s advocate submitted that Odisha pays Rs 10 lakh for persons suffering from muscular dystrophy.
Asked about whether the amount be paid on a one-time basis or monthly, the chief justice remarked, “Monthly is better, one-time pay will only be for Durga Puja.”
Under secretary of health ministry, Swarnendu Singha, appeared virtually on Thursday and apprised the court on the proceedings taking place at Delhi High Court. Following Justice Prathiba M Singh’s directions, a national rare disease committee was constituted and the basic mandate was to negotiate with either manufacturing or marketing drug companies to explore the possibility of procuring the medication at a reasonable cost. He informed the Calcutta HC that the finance ministry, in principle, has approved enhancement of the budget and that they are awaiting the judgement of Delhi HC.