Toddler with rare disease gets chance to life as Telangana HC intervenes

Hyderabad: Chances of survival for 17-month-old baby M. Parnika have improved with the intervention of the Telangana High Court. Baby Parnika who suffers from a rare disease Gaucher, requires costly medical treatment of enzyme replacement therapy. The Telangana High Court, has directed the respondents to provide necessary treatment to the child forthwith.

Justice T. Vinod Kumar gave the interim direction in the Writ Petition filed by the child, represented by her father, who is a private employee in Jagityal. The government pleader also informed the court that the government has instructed the superintendent of Niloufer Hospital to admit the child as in-patient and provide necessary treatment, which was recorded by the judge in his order.

The petitioner, the child, was born in April 2018. She suffered from respiratory disorders. After various tests done in various hospitals, she was diagnosed with a rare genetic metabolic disease, ‘Type 1 Gaucher’. The disease requires enzyme replacement therapy (ERT) with recombitant imiglucerase enzyme. Otherwise this condition would lead to growth failure, significant enlargement of the liver and spleen and other risks. If untreated it has a high risk of mortality.

The treatment involves administering ERT in the form of fortnightly infusions lifelong or till the patient’s condition improves significantly. The drug retailed under Cerezyme 400 IU vial costs around Rs 40 lakh per annum and it has to be imported from the USA. The counsel for the petitioner informed the court that the father of the child is a private employee with no means of footing such a bill and it is the duty of the government to protect the life of its citizens, especially when they are suffering from rare diseases. She cited judgment by the Delhi High Court, which in similar circumstances, held that the state is duty bound to provide treatment in such rare diseases.

With the Telangana Government also coming forward by informing the court that the superintendent of Niloufer Hospital has been instructed to provide treatment to the child as in-patient, the Court passed orders directing the respondents to provide necessary treatment to the child forthwith.

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