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The Health Ministry informed the Delhi High Court on Thursday that five lakh people in the country are suffering from DMD, a rare disease and need to be treated with a genetic method and each patient will be treated with a cost of Rs five crore annually, but the government Does not have a budget.
The ministry gave this information during the hearing on a petition filed by two children suffering from DMD. It is noteworthy that DMD is a rare genetics disease affecting boys. In the court of Justice Pratibha M. Singh, Deputy Secretary, Ministry of Health, Dr. Pulkesh Kumar assured that the new National Health Policy on Rare Diseases-2020 will be notified by 31 March this year, in which funds for expensive treatment and medicines for rare diseases There will be a provision.
After hearing the government’s side, the court listed the case on February 19, saying, “We need to find a solution on a large scale”. Earlier, the court told the ministry that the company – US-based Sarepta Therapeutics – had to Likhe, who makes experimental medicine for DMD, is considering giving free medicines to these two children whose families cannot afford such expensive medicines.
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