Rare diseases is a group of estimated 7,000 diseases, most rare diseases are genetic. Many of them do not have treatments available, but there are certain rare diseases for which treatment is available but it is quite costly. Drafting of national policy has now come as a hope for children suffering from rare diseases. Six children in Rajasthan died in past two years as they failed to receive the available treatment because of its high cost.
Recognizing the fact that rare disease is a major public health concern globally including India, the Centre has decided to draft a policy for the treatment of rare diseases in the country.
Ministry of health and family welfare issued order for constituting of expert technical committee (policy group) to draft a national policy for treatment of rare diseases.
JK Lon superintendent Dr Ashok Gupta is one of the 10 members of technical committee, which will be headed by Dr IC Verma from Sir Ganga Ram Hospital’s Institute of Medical Genetics & Genomics. The other members of the committee are from AIIMS, Maulana Azad Medical College, Sanjay Gandhi Postgraduate Institute of Medical Sciences in Lucknow, Postgraduate Institute of Medical Education and Research in Chandigarh, Jawahar Lal Nehru University, representative from drug controller general of India and a representative from ministry of finance.
Dr Gupta said, “The committee will meet on March 22 in Delhi and it will present its report by the end of March.”
He said that in terms of rare diseases a lot has to be done in diagnosis of rare diseases, its treatment and also on mechanisms for dealing with rare diseases.
He said that the committee will review the current situation of rare diseases in the country and define rare diseases in the Indian context. Also, focus will be on establishing norms for laboratories for diagnosis of rare diseases.