The court ordered the release of the funds within three working days, warning that if not complied with, the Joint Secretary of the Union Health Ministry must appear in court at the next hearing.
NEW DELHI: The Delhi High Court refused to withdraw its earlier directive instructing the Centre to release Rs 10 crore to AIIMS, Delhi, for the continued treatment of 18 patients suffering from Duchenne muscular dystrophy (DMD), Gaucher disease, and Mucopolysaccharidosis (MPS). The court emphasized that halting the ongoing treatment would negatively impact the patients’ health.
The court ordered the release of the funds within three working days, warning that if not complied with, the Joint Secretary of the Union Health Ministry must appear in court at the next hearing.
“Suspending treatment for these patients would be unjust and against the law, as it would severely affect their quality of life and health,”
stated the court.
Justice Prathiba M Singh, presiding over the case, reiterated that since the treatment had already started, the amount must be released within three days. Should the Centre fail to comply, Latha Ganapathy, Joint Secretary of the Ministry of Health and Family Welfare, is required to attend the next hearing on October 3.
The court also dismissed the Centre’s plea to recall its September 13 order, which mandated the release of Rs 10 crore to AIIMS for the treatment of the patients.
The children have already received medications under the National Policy for Rare Diseases (NPRD), 2021. The court noted that since the funds are being directed to AIIMS, which is fully accountable for the expenditure, the Centre should release the amount.
In its application, the Centre argued that AIIMS’ allocated budget had been exhausted, and other centres of excellence had also requested funds. In response, the court reiterated that AIIMS, Delhi, is a recognized nodal centre of excellence actively treating patients with rare diseases.
The Centre’s counsel informed the court that out of the Rs 34 crore allocated, AIIMS had spent only Rs 9 crore so far. Dr. Madhulika Kabra from AIIMS, who participated virtually, clarified that the total expenditure for rare disease treatments will only be fully accounted for after the medicines are procured. She also mentioned that orders for several patients have already been placed, and without additional funds, continuing treatment would be impossible.
The High Court refused to recall its previous order and instructed the Centre to release Rs 10 crore to AIIMS for the treatment. AIIMS, in an affidavit, mentioned that 227 children had been allocated funds under the NPRD, 2021. The affidavit also included a detailed chart outlining the type of disorder, treatment provided, allocated funds, and expenditures for each case.
Earlier this year, while hearing petitions from children with rare diseases, including Duchenne muscular dystrophy (DMD) and Mucopolysaccharidosis II (MPS II or Hunter syndrome), the court formed a five-member committee to oversee the implementation of the NPRD, 2021. This committee is responsible for the procurement and “indigenization” of therapies and medications for the patients.
DMD is a rare genetic disorder primarily affecting boys and causing progressive muscle weakness. MPS II, also a rare disease that is inherited, affects boys who lack the ability to break down a specific sugar that contributes to the development of bones, skin, tendons, and other tissues.
The court ordered that members of the national rare diseases committee include the secretary of the Union Health Ministry or a nominee, the director general of the Indian Council of Medical Research (ICMR), the Drug Controller General of India, along with Dr. Kabra and Dr. Nikhil Tandon from AIIMS.
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