Kerala High Court Calls For Regulative Measures For Transparent, Efficient Crowdfunding Towards Treatment For Rare Diseases

The Kerala High Court on Wednesday yet again directed the State to design a platform to implement regulative measures for crowdfunding towards funding treatment for children affected with rare diseases.Justice P.B. Suresh Kumar part-heard the submissions today in an elaborate hearing of a plea where the public had raised around18 crores via crowdfunding to save a boy diagnosed with Spinal Muscular Atrophy (SMA) in the State.The Court also noted that efforts of the State to mobilise funds for such treatment had gone in vain desire multiple attempts. "We have no platform to regulate such funding. The State has made several attempts to raise funds for the treatment of rare diseases. This Court has even issued judgments in this regard, but they have not been fruitful. My question is, if private individuals can raise such a huge amount in a matter of weeks, why can't the State do the same?The Court was then informed that this occurred due to lack of publicity. The counsel mentioned that although KELSA (Kerala Legal Services Authority) had initiated several promotional drives, they were not as successful due to a lack of publicity. He added that massive advertising through celebrities and social media platforms were the main reason for private crowdfunding efforts bearing fruit in the State. He also hinted at the inhibition of the citizens to contribute to the State machinery for the same cause due to lack of trust about the funds being misdirected. To this, the Judge responded:"Yes, I agree. I didn't want to mention that here but I think the problem is accountability. The citizens do not have faith in the system; they feel their money will be lost in the bureaucratic channel. They want something accountable, transparent, and most importantly, efficient."Special Government Pleader T.B. Hood appeared for the State and submitted that he had filed an affidavit in the matter. He informed the Court that meetings were convened after which it was decided to prepare a concept note for regulation of crowdfunding for rare diseases and measures to verify the beneficiaries. It was also notified that the process was nearing completion and sought two weeks time to come to a final decision The Court emphasised: "We need something workable. I saw a new report that said that a similar campaign was run by the Delhi Government. And it was quite successful. I want to adopt something similar. They are raising crores of money through their scheme."The Government Pleader also raised that the question of whether framing such a regulation falls within the State list could be a possible roadblock in the process. The Court thereby directed the State to examine if it was under its authority under Entry 6 of List II, which deals with public health.The Singe bench further expressed its concern that 'every Tom, Dick, and Harry was collecting funds via crowdfunding' for the treatment of children suffering from rare diseases and asked the State whether it has any control over such transactions. Advocate Chandrasekhar P appeared for the petitioner and brought forth insightful submissions in the matter. He drew the attention of the Court to the fact that money collected through crowdfunding was a resulting trust, to be returned to the person who provided the fund in the first place. He added that since most of the time, donations were given by anonymous persons and their identity could not be traced, the government was entitled to use such unaccounted money as bona vacantia. Another concern raised by the Counsel was that government hospitals were not administering imported medicines brought for treatment of rare diseases such as SMA despite the patients and their families bringing it to them. He argued that when private hospitals were not hesitating to do so, government hospitals were not cooperating. The Court took note of the concern. However, strict instructions were provided to hold the funds collected till date until further orders, and not to hand the money over to the government till then. This development occurred during the hearing of the petition filed by a helpless father seeking assistance from the State to import a life-saving drug from the US for his son who was suffering from Spinal Muscular Atrophy. The Court noted that around 18 crores were recently raised through crowdfunding for the treatment of a child suffering from the rare disease.The petition had become infructuous since the infant had succumbed to his disease before treatment could be arranged for him. However, the Court is proceeding with the petition for the public interest to help similarly placed individuals. The Court had earlier directed the State to supervise the process of crowdfunding in the State and urged that some sort of government control be placed on the process to ensure its reliability.Case Title: Arif v State of Kerala

Kerala High Court Calls For Regulative Measures For Transparent, Efficient Crowdfunding Towards Treatment For Rare Diseases

Hannah M Varghese

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