Delhi HC asks Centre to help fund treatment of minor suffering from rare disease
The Delhi high court has asked the Centre to look into the issue of funding the treatment of a five-year-old girl, who is one of the two persons in the country suffering from one of the rarest diseases Biotin-thiamine-responsive basal ganglia disease (BTRBGD), “a rare genetic disorder which may be recorded in human history”.
The disorder manifests itself with varied neurological manifestations, the early identification and treatment of which prevents associated mortality and morbidity.
Justice Najmi Waziri, on March 4, took note of the submission by the child’s mother who had contended that there is some hope for treatment of her child in the United States of America, where ameliorative treatment has been administered to some patients similarly afflicted.
She told the court that the treatment involves multiple operations on the brain, over a period of 6 months but for medical reasons, it can be performed only upon a person over 7 years of age. She informed Justice Waziri that the expense in this regard would run into crores of rupees, which she cannot afford.
According to the mother, the child has to be kept on a ventilator for approximately 10 to 12 hours a day. For this purpose, a trained nurse was engaged and hence expenses increased. She also told the court that as per an earlier order of Justice Waziri on August 31, 2018, the Delhi government was paying her ₹12,000 for the trained nurse, however the expense had risen to ₹50,000.
On August 31, 2018, the court had directed the Delhi government to bear the medical and nursing expenses of the child, considering the circumstances of the case. While hearing a matrimonial dispute between the parents of the girl, the court had asked the Delhi government to step in and extend a helping hand.
Considering it was not feasible for the mother to pay the high cost of the treatment, it had asked the Delhi government to offer all possible assistance taking in account the high cost of medicines and expenses towards engaging of a nurse and other specialised, trained staff.
The mother had then informed the court that the child had to be kept in a sanitised environment in the house at Sarojini Nagar and attended by competent doctors of the All India Institute of Medical Sciences (AIIMS).
On March 4, during a hearing of a contempt petition against the husband for the disbursal of maintenance, the woman told the court that the child required some more immediate assistance such as a portable ventilator, tubes and filters, etc in addition to the assistance offered by the Delhi government.
She said that the child responds to her mother, her grandmother and a few other persons whom she recognises, and her physical health had has improved with the help of the Delhi government.
The court asked advocate Satyakam, additional standing counsel of the Delhi government, to consider the mother’s request compassionately and supply the requisite medical equipment to the mother before the next date in wake of the unprecedented nature of affliction and the uniqueness of the case.
It also said that the Centre should step in and “consider this rare case for treatment of its most needy citizen”. The judge issued notice to the Centre, represented by standing counsel Gaurang Kanth, and the Delhi government, seeking to know their stand on the matter.