Judge said the treatment of 18 patients had already begun and discontinuation of the treatment would have a negative repercussion on their health
The Delhi High Court has refused to recall its order directing the Centre to release ₹10 crore to the All India Institute of Medical Sciences (AIIMS) here to continue the treatment of 18 patients suffering from rare disease.
Justice Prathiba M. Singh said the treatment of the 18 patients had already begun and discontinuation of the treatment would have a negative repercussion on their health. The court said in its September 27 order if the amount was not released within three working days, the Joint Secretary of the Union Health Ministry had to be present in the court on the next date of hearing.
“Under such circumstances, withholding the treatment of these 18 patients would be completely unjust and contrary to law, as the same would have a debilitating effect on their general living condition and health,” Justice Singh said.
The Centre had sought to recall the September 13 order of the court by which it was directed to release a sum of ₹10 crore to AIIMS, Delhi to continue the treatment of the 18 patients.
These children have already been administered medicines under the National Policy for Rare Diseases (NPRD), 2021.
In its application, the Centre had submitted that the budgeted amount for the AIIMS was already exhausted and there were other centres of excellence that had requested for release of funds.
The Centre’s counsel said of the allocated amount of ₹34 crore, the AIIMS had spent only ₹9 crore as of now.
Dr. Madhulika Kabra of the AIIMS, who appeared in the court virtually, clarified that the total amount spent on the procurement of medicines for patients suffering from rare diseases would only be reflected after the medicines have been procured.
She said there were several patients for whom orders had already been placed and the amount had to be utilised for them, and added that the continuation of the treatment would not be possible without further allocation of money.
The AIIMS, in an affidavit, has also said 227 children were allocated funds under the NPRD, in 2021. It has also provided a detailed chart indicating the type of disorder, nature of treatment, funds allocated, expenditure incurred and other relevant information pertaining to such cases.
Earlier this year, the High Court had, while dealing with petitions filed by children suffering from several rare diseases, including Duchenne muscular dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter syndrome), constituted a five-member committee for the implementation of the NRDP, 2021, including procurement and “indigenisation” of therapies and drugs for the patients.
