DMD, one of several forms of muscular dystrophy, is a rare genetic disease that affects boys primarily and causes progressive weakness.
On Thursday, Justice Prathiba M Singh, while hearing two pleas filed on behalf of two children who are suffering from DMD, was told by deputy secretary of the ministry of health, Dr Pulkesh Kumar, that there are more than five lakh DMD patients requiring genetic therapy in India and the current cost of such therapy was approximately ₹5 crore per child annually.
Kumar said the new National Health Policy for Rare Diseases, 2020, will be notified by March 31 this year and it will have a clause for crowd funding expensive medicines and treatments for rare illnesses.
On the last date of hearing, the court had directed the Centre to implement the draft policy for rare diseases while noting that such an important issue cannot be left unfinished for so long — the draft has been pending finalization for the past year and a half.
