The Kerala High Court on Wednesday stressed the need for government regulation on crowdfunding for treatment of children with rare diseases.
Justice P.B. Suresh Kumar pointed out that there was no platform of crowdfunding for treatment of persons afflicted with rare diseases. The court made the observation when a batch of petitions for raising crowdfunding for treating children suffering from various rare deceases came up for hearing.
The court said the State government had made several attempts to raise funds for the treatment of rare diseases. The High Court had even issued judgments in this regard. However, they had not been fruitful. The question was if private individuals could raise huge amounts in two or three days, why could not the State do the same.
Special government pleader T.B. Hood submitted that the State government was taking steps to regulate crowdfunding and verify the beneficiaries.
P.A. Mohammed Shaw, counsel for Manjalamkuzhi Ali, MLA, who headed a committee for crowdingfunding the treatment of Imran Mohammed (who later died) submitted that of the ₹16-crore raised, it was decided to pay ₹2 crore each to six children afflicted with SMA disease.
A part of the balance amount would be utilised to construct a building in the Mankada Government Hospital for treatment of children with rare diseases. In fact, several patients had requested to spare the balance amount for their treatment. The counsel, therefore, sought permission of the court to give the amount to needy persons.
The court directed the committee to hold the amount collected through crowdfunding until further orders.
