The Delhi High Court has directed the Centre to immediately release ₹5 crore to the AIIMS for treatment of children suffering from rare diseases.
Hearing a batch of petitions representing children with rare diseases like Duchenne muscular dystrophy (DMD) and Hunter syndrome, a Bench of justice Prathiba M. Singh directed the Central government to disburse the funds within two weeks.
The petitioners had submitted that medicines and therapies for these diseases are exorbitantly expensive, and hence sought free-of-cost treatment.
“It is expected that by the next date, the Union of India will iron out the remaining issues in the working of the policy, so that all other persons covered by the policy are also provided the necessary treatment at the earliest,” Justice Singh said.
The court added that the Ministry of Health and Family Welfare should depute a senior official, at least of the level of Joint Secretary, to join the proceedings on March 1, the next date of hearing.
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