Kerala High Court Issues Directions To Regulate Crowd Funding For Treatment Of Rare Diseases

The Kerala High Court has issued a set of directions to the State and the Central governments in an attempt to make available adequate funds for treating patients suffering from rare diseases, particularly for those who cannot afford such expenses, to enforce the rights guaranteed to the citizens under Article 21 of the Constitution. Justice P.B. Suresh Kumar directed the Centre and State to file affidavits within a month indicating inter alia the progress of the crowdfunding scheme sought to be established in the State. The Court noted that it was imperative to disseminate certain guidelines on the issue since although effective treatments were available for most rare diseases, only a handful could afford their expenses. Therefore, most of the patients, especially children of tender age, were doomed to die lacking funds to meet the treatment expenses. It was also pointed out by the Judge that the lack of facilities in the State for the same was also responsible for this crisis. It is to be noted that Spinal Muscular Atrophy (SMA) is an extremely severe and rare genetically inherited degenerative neuromuscular disease and about 100 children in the State suffer from it.Though there are life-saving drugs including Zolgensma for its treatment, they are prohibitively expensive and no facilities whatsoever have been provided by the Centre or State, especially for those who cannot afford the expenses for the treatment. "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." The Court remarked that the credibility of a democratic legal system is intrinsically linked to the enforceability of rights of citizens. It was asserted that the enforcement of socio-economic rights poses a major challenge to the legal system. "True, in matters where availability of resources has a material bearing and policy regarding priority is involved, it may not be prudent for constitutional courts to give directions. At the same time, when constitutional courts are convinced that fundamental rights of citizens cannot be enforced without judicial interference, the principle of continuing mandamus which is now an integral part of our constitutional jurisprudence, could certainly be invoked for the purpose of enforcing the fundamental rights of the citizens to bridge the gap between right and remedy." Therefore, learning that facilities for treatment of rare diseases would not materialize without judicial interference, the Court found itself constitutionally obliged to issue directions to the State to make available certain facilities:Directions Issued:(A) The Centre shall file an affidavit indicating:whether the Centres of Excellence (COEs) provided for in the National Policy are working as contemplatedwhether amounts sufficient for the treatment of rare diseases, especially for those included in Group-3 of the National Policy could be generated through the digital platform established for crowdfunding if not, whether any alternative arrangements have been made for the treatment of such diseases. criteria, if any, prescribed for admission of patients suffering from rare diseases belonging to other States in the COEs.impediments, if any, in establishing COEs in all the States and if there are no impediments, the steps, if any, to be taken by the State Governments for the said purpose.(B) The State shall file an affidavit indicating:the present stage of development of the Concept Note for raising crowdfunding for treatment of rare diseases the steps taken for identification of beneficiaries, and for engaging services of social media groups for encouraging donations for treatment of rare diseases referred to in the affidavit filed by the Principal Secretary to Government, Health and Family Welfare Department dated 1.10.2021.(C) The State shall indicate in the affidavit, after obtaining the opinion of the experts in the field: the particulars of the rare diseases included in the National Policy for which effective treatments are available and the financial burden of which could be borne by the State Governmentthe impediments, if any, in making arrangements in one or more Medical Colleges in the State for treatment of rare diseases included in the National Policywhether a digital platform could be established exclusively for crowdfunding for treatment of rare diseases, indicating the details of each and every patient undergoing treatment, the summary of disease, the amount required for treatment, the amount collected etc., with provision for separate campaigns dedicated for each patient, with the participation of the representatives of the people.(D) The State shall forthwith make a provision for receiving the unutilized funds...

Kerala High Court Issues Directions To Regulate Crowd Funding For Treatment Of Rare Diseases

Hannah M Varghese

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