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Court Orders Financial Aid for Rare Genetic Disorder Treatment
17 Sep
Summary
- Court directed financial aid for rare genetic disorder.
- Treatment cost for children is approximately Rs 72 lakh annually.
- Children admitted to SGPGI for evaluation and treatment.
The Allahabad High Court has intervened to secure medical treatment for three children diagnosed with Mucopolysaccharidosis Type-I (MPS-I), a rare genetic disorder. The court directed the Union government to consider providing financial assistance for their treatment, which carries an estimated annual cost of Rs 72 lakh.
In its September 15 order, a bench of Justices Alok Mathur and Amitabh Kumar Rai mandated the admission of the children to Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGI) in Lucknow for necessary medical evaluations and treatment. The court emphasized the state's responsibility to support citizens facing unaffordable medical expenses.
Following previous orders seeking responses from various authorities, the state government and SGPGI had already released some funds. The court referenced the National Policy for Rare Diseases (NPRD) 2021, suggesting the Centre could approve aid upon recommendation from the rare diseases committee.
The Union Health Ministry must receive a demand for funds within 24 hours of the children's admission. The Centre is expected to make a time-bound decision on financial assistance within ten days. The next hearing is scheduled for September 30, with both the Union government and SGPGI required to submit compliance affidavits.
