KOCHI: The Kerala High Court on Wednesday directed the committee chaired by an MLA to hold the amount collected through crowdfunding for the treatment of children suffering from rare diseases and not hand the money over to the government until further orders of the court. It also directed the state to design a platform to implement regulative measures for crowdfunding for the treatment of children affected with rare diseases.
Manjalamkuzhi Ali, MLA, who is the chairman of the committee constituted to collect money for the treatment of Imran Muhammed from Perinthalmanna, who died of spinal muscular atrophy, submitted that Rs 16.5 crore were collected through crowdfunding. Several requests were received from children having similar issues for financial aid.
Kalliasseri MLA M Vijin, coordinator of the treatment committee of toddler Muhammed, submitted that they received Rs 46.78 crore through crowdfunding and Rs 18 crore has been used for his treatment. The committee decided to hand over the balance amount to the state government. Then the court said that the balance amount should be kept with the committee until further orders of the court.
Justice P B Suresh Kumar issued the order while considering a batch of petitions seeking a directive to provide funds for treating children suffering from rare diseases.
The court also observed that efforts of the state government to mobilise funds for such treatment had gone in vain despite 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 two or three days, why can't the state do the same?" the court asked.
The court was then informed by a counsel, who impleaded in the case, that this occurred due to lack of publicity. He added that massive advertising through celebrities and social media platforms was the main reason for private crowdfunding efforts bearing fruit in the state. He also hinted at the inhibition of citizens to contribute to the state machinery for the same cause due to lack of trust about the funds being misdirected.
'Citizens do not have faith in the system'
The court orally observed that citizens do not have faith in the system. They feel their money will be lost in bureaucratic channels. They want something accountable, transparent, and most importantly, efficient.
Special Government Pleader T B Hood submitted that the state government is taking steps to regulate crowdfunding for rare diseases and measures to verify the beneficiaries. The court said, "We need something workable. I saw a news report that a similar campaign was run by the Delhi government. And it was quite successful. They are raising crores of money through their scheme."
The single bench further said 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.
The court also directed the central government to file a statement explaining why no hospitals in the state have been notified for giving treatment to rare diseases under the Centre's scheme.