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IN THE HIGH COURT OF KERALA AT ERNAKULAM
P.B. SURESH KUMAR, J.
ARIF S/O MOHAMMED ASHRAF – Petitioner
Versus
THE STATE OF KERALA – Respondent
WP (C) No. 7984 of 2021
Decided On : 21-01-2022
Constitution of India, Article 21 - Enforcement of rights against State - Where there is a right, there is a remedy, ubi jus ibi remedium - Toddler was suffering from a rare disease Spinal Muscular Atrophy1 (SMA) - Whether treatment could be extended for all rare diseases making use of the facilities made in terms of the National Policy - Court is constitutionally obliged to issue appropriate directions to the State Government to make available facilities for treatment of such diseases so as to enforce the federal rights guaranteed to the citizens under Article 21 of the Constitution. (Para 16)
Finding of the Court:
Facilities for treatment of rare diseases would not be in place in the State in the near future without judicial interference - Court is constitutionally obliged to issue appropriate directions to the State Government to make available facilities for treatment of such diseases so as to enforce the federal rights guaranteed to the citizens under Article 21 of the Constitution.
Result: Directions issued.
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 disease; that SMA results in progressive loss of motor nerve cells in the brain stem and spinal cord that controls essential muscle activity and that those who are affected by SMA at a very early stage of their life may not survive and though persons who are affected by SMA at a later stage would survive, they need supportive care. It is also revealed from the said affidavit that there are about 100 children in the State who are suffering from SMA; that though there are life saving and life altering drugs including Zolgensma for the treatment of SMA, they are prohibitively expensive and no facilities whatsoever have been provided by the Central and State Governments for treatment of SMA, especially for those who cannot afford the expenses for the treatment.
4. It has come out that since there are no facilities in the State for treatment of rare diseases especially for those who cannot afford the expenses for treatment, a committee was formed under the Chairmanship of a Member of the State Legislative Assembly for raising funds for the treatment of the son of the petitioner and the said committee could collect approximately Rs.16.5 crores. Unfortunately, since the son of the petitioner died in the meanwhile during the pendency of the writ petition, the amount collected could not be utilised for the purpose. The Chairman of the committee which collected funds for the treatment of the son of the petitioner is the fourteenth respondent in the writ petition. Similarly, it has come out in the course of the hearing that a sum of Rs.46,78,72,125.48 has been collected by a committee under the co-ordinatorship of another Member of the State Legislative Assembly for treatment of a similarly placed child. The co-ordinator of the said committee is the fifteenth respondent in the writ petition.
5. It is seen that since the takers of the drugs for treatment of rare diseases are only a minuscule, they are sold at prohibitively expensive prices, presumably to recoup the cost of its research and development. Since the drugs for treatment of such diseases are prohibitively expensive and since no facilities whatsoever have been provided by the State Government for treatment of rare diseases, as in the case on hand, most of the patients, especially children of tender age are doomed to die. Having noticed the said reality and having found that the inaction on the part of the State Government in not making any facilities for treatment of rare diseases would amount to flagrant violation of the right to life guaranteed under Article 21 of the Constitution, it was felt that as the sentinel on the qui vive, this Court is constitutionally obliged to intervene in the matter, despite the fact that the relief sought for in the writ petition has become infructuous, and the matter is reta
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