Don’t have funds to treat 5 lakh suffering from rare form of muscular dystrophy, health ministry tells HC

The Centre on Thursday informed the Delhi high court that it does not have the budget to treat over five lakh people suffering from a rare disease, Duchenne muscular dystrophy (DMD), in the country as it requires genetic therapy which costs about ₹5 crore per child annually

The Centre on Thursday informed the Delhi high court that it does not have the budget to treat over five lakh people suffering from a rare disease, Duchenne muscular dystrophy (DMD), in the country as it requires genetic therapy which costs about ₹5 crore per child annually.

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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.

Justice Singh remarked that a solution should be found at the higher level and posted the matter to February 19.

The court also directed the All India Institute of Medical Sciences (AIIMS) to file an affidavit within a week giving certain details such as the details of the therapy provided to one of the patients and its effect on the child.

“The institution shall also state the manner in which medicine of the said patient was ordered from Sarepta Therapeutics and whether there was an intent supplier of medicine at that stage for the patient….AIIMS will also mention in the affidavit the condition of the child after the ongoing six-month therapy,” the court said.

Advocate Ashok Agarwal, representing the other child petitioner, said the government should do some research and make an endeavour to invent the drugs in the country itself to save lives of people suffering from this illness.