Back
P.B.SURESH KUMAR
ARIF S/O MOHAMMED ASHRAF – Appellant
Versus
STATE OF KERALA – Respondent
The Court opined that there exists a gap between the right to life under Article 21 and its remedy against the State, particularly in enforcing rights for treatment of rare diseases, necessitating judicial intervention to bridge it.[15000519870001] (!) SMA is a severe rare genetic neuromuscular disease affecting about 100 children in Kerala, with life-saving drugs available but prohibitively expensive and no State facilities provided, leading to deaths among those unable to afford treatment.[15000519870002][15000519870004][15000519870009] The National Policy for Rare Diseases 2021 by the Centre categorises diseases and prioritises affordable interventions with crowdfunding, but lacks COEs in Kerala, rendering facilities inaccessible to most, especially the poor.[15000519870005][15000519870006][15000519870011] The State lacks a concrete policy, with steps like crowdfunding and beneficiary norms only in infancy despite years of awareness, evidencing lackadaisical approach, as contrasted by rapid private fund collections.[15000519870007][15000519870008][15000519870012][15000519870013] International obligations and Article 21 impose a duty on the State to provide medical assistance, especially to preserve life, and inaction violates this fundamental right.[15000519870010][15000519870011] Facilities for rare disease treatment would not materialise soon without judicial directions, invoking continuing mandamus to enforce Article 21 rights.[15000519870014][15000519870015] Funds collected by committees (respondents 14 and 15) for specific SMA children, unutilised due to death, must be treated as bona vacantia and redirected exclusively for SMA drug procurement, prioritising maximum benefit.[15000519870016][15000519870017]
ORDER :
1. There cannot be any doubt on the principle that where there is a right, there is a remedy, ubi jus ibi remedium, but the facts of this case unfortunately disclose that there is a gap in reality between right and remedy, especially when it comes to the enforcement of rights against State. The attempt of this Court in this matter, therefore, is to bridge the said gap.
2. Coming to the facts, the son of the petitioner Imran Mohammed, a toddler was suffering from a rare disease 'Spinal Muscular Atrophy' (SMA). It was alleged by the petitioner that the life of his son cannot be saved otherwise than by administering the drug “Onasemnogene Abeparvovec (Zolgensma)” which costs approximately Rs. 18 crores. The case of the petitioner was that since he is unable to secure the drug, the State is obliged to secure and administer the same to his son to save his life.
3. An organisation of the parents of children suffering from SMA called “Cure SMA Foundation of India” has got themselves impleaded as seventeenth respondent in the writ petition. The affidavit filed by them in this matter reveals that SMA is an extremely severe and rare genetically inherited degenerative neuro muscular dise
An indispensable Tool for Legal Professionals, Endorsed by Various High Court and Judicial Officers
Please visit our Training & Support
Center or Contact Us for assistance
Scan Me!
India’s Legal research and Law Firm App, Download now!
For Daily Legal Updates, Join us on :
Back to top
