Hyderabad: Government to help girl with rare disease

Hyderabad: The Telangana High Court came to the rescue of a 17-month-old girl, Ms. M. Parnika, who is suffering from Gaucher disease and directed the state government and the Niloufer Hospital to provide her the necessary treatment.

Parnika requires life-long treatment, and a vital injection, administered every fortnight. He annual medical bills amount to Rs 40 lakh.

Gaucher disease is a rare, inherited, metabolic disease that affects many parts of the body.  It is a caused by an inborn enzyme deficiency, which leads to growth failure and significant enlargement of the liver and spleen.

Patients are more vulnberable to fractures and bone marrow infiltration, severe anaemia and low white blood cell and platelet counts.

Justice Tadakamalla Vinod Kumar was dealing with the petition by Mr Kiran Kumar, father of Ms. Parnika, a private company employee, who said he could not afford her treatment. He sought a directive to the Nizam's Institute of Medical Sciences or any hospital and the central and state governments to provide medical treatment to his daughter.

While hearing the case, the court learnt that Niloufer Hospital had the necessary medicine readily available for the treatment. The judge directed the government  to constitute a committee at the earliest and provide necessary treatment to Parnika.

Mr Nagesh Bheema-paka, counsel for the state government, said instructions had been passed on to the Niloufer Hospital superintendent to admit Ms. Parnika as an in-patient.

Ms. Parnika is suffering from Type I Gaucher disease and requires enzyme replacement therapy (ERT) with recombitant imiglucerase enzyme (Cerezyme).

When her parents approached  private hospitals, they were informed that the ERT has to be administered life-long at fortnightly intervals. They were told that dosage of medicine depends upon variation in the weight of the child and cost of the Cerezyme 400 IU vial is Rs 40 lakh per year.