NEW DELHI: The Delhi High Court has asked the AIIMS to provide treatment to an 18-month-old girl who is suffering from a rare disease ‘Gaucher’, without charging anything from her father. Justice Prathiba M Singh noted that as on date, there is no policy for dealing with persons with rare diseases and how the treatment is to be provided to them. The court directed the Centre to file an affidavit before the next date of hearing (April 17) on the current policy of the government on rare diseases.
The court, in its order passed on March 23, said the order should be communicated to the Medical Superintendent and Director of AIIMS to commence the treatment of the child immediately. The court was hearing a petition filed by the child’s father seeking funds for her treatment and direction for treating her for the disease as repeated representations made to various government authorities had not been fruitful. The counsel for the child’s father told the court that the monthly cost of treatment of the disease is about Rs 3.5 lakh.
The court was informed that ‘Gaucher’ has been treated as an ‘orphan disease’ in the US and the European Union. It is a genetic disorder where fat-laden Gaucher cells build up in areas like the spleen, liver and bone marrow. The court noted the expense for this treatment is steep which the family cannot afford.
“Considering the age of the child and given that the policy for rare diseases is yet to be finalised by the government, it is deemed appropriate to direct AIIMS to start the treatment of the petitioner (child) without charging anything from her.”