The Centre has told the Delhi High Court that it did not allocate an initial corpus for treatment of life-threatening diseases under the National Policy on Treatment of Rare Diseases despite telling the court earlier that a Rs 100-crore corpus was created for the purpose, The Indian Express reported on Wednesday.
The Ministry of Health and Family Welfare told Justice Manmohan that it has decided to reframe the policy after realising that health is a state subject and that permission of most states had not been obtained before drawing up the policy.
“The most important limiting factor for implementation of the existing policy was supporting it under the National Health Mission,” the government said in an affidavit filed after the court, on November 30, asked it to furnish details of the policy. “The mandate of NHM is only primary, and secondary care and does not cover management tertiary care. Rare diseases management mostly fall under tertiary care.”
About funding for the policy, Health Secretary Preeti Sudan said the money was not allocated under the National Health Mission, The New Indian Express reported. “This occurred under an honest mistaken belief,” she added.
The court’s directive to the government on November 30 came after it heard a plea by three children, who, through their counsel Ashok Agarwal, sought direction for treatment of rare diseases.
In India, 70 million patients reportedly suffer from conditions such as thalassemia, sickle-cell anaemia, Pompe disease and Gaucher’s disease, The New Indian Express reported. Most people cannot afford treatment as the cost runs from Rs 15 lakh to more than Rs 1 crore a year.