Passing its order in a PIL case, the Punjab and Haryana High Court has given the central government six months to come up with a decision on the National Policy for Treatment of Rare Diseases, reports The Indian Express.
The court had taken suo moto cognisance of the PIL in 2015, in a matter relating to a widow’s three children who were all suffering from a rare condition known as LGB syndrome. The mother was unable to provide them with adequate treatment as she lacked the financial means to do so. The court was informed that two of the children later died.
The Ministry of Health and Family had in 2017 drafted the policy and even circulated copies of the same to all state governments and union territories; it was however kept in abeyance in December 2018 considering the need to revise it in light of new information.
The original policy had proposed setting up an initial Rs 100 crore fund in order to finance the treatment of rare medical conditions.
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