THE PUNJAB and Haryana High Court has directed the Centre to take a decision within six months regarding the National Policy for Treatment of Rare Diseases, which has been kept on hold since last year.
“The Union of India is directed to take all necessary steps pursuant to letter dated December 18, 2018 as far as possible within six months from today,” reads an order passed by the Chief Justice Ravi Shanker Jha and Justice Rajiv Sharma on Thursday.
In the letter placed before the HC, the bench was informed that the national policy was formulated by the Ministry of Health and Family Welfare and a copy of it was circulated to all the states and Union Territories in 2017 for necessary action. However, the letter adds, a decision was taken to revise the policy and keep the existing one in abeyance till the revised policy is issued.
The order directing the Centre to take action within six months has been passed by the HC in a suo motu PIL initiated by it in 2015 on the basis of a news report depicting the “pitiable health and living condition” of a Patiala widow’s three children, who were suffering from a disease known as LGB syndrome. The children were not being provided a proper medical treatment as their mother was in poor financial condition. Two of the children died later, as per an official reply to court last year.
In December 2018, the Ministry of Health and Family had issued a notification that it has been decided to review the policy in the light of “new information and updates available/received for further improvement and effective implementation”. An expert committee constituted for the purpose was required to submit a report within eight weeks to the Ministry. As per the policy announced in 2017, the central government had to set up a corpus fund with an initial amount of Rs 100 crore towards funding treatment of rare genetic disorders.