Kerala High Court. (file photo)
The Kerala High Court on Wednesday directed the state government to create a platform for implementing regulatory measures for crowdfunding for treatment of children affected by rare diseases. The court asked the state, if private individuals can raise such a huge amount in a few weeks, why can’t the state do so? The court gave this direction while hearing a petition filed by a father seeking assistance from the state government to import life-saving medicine from the US for his son suffering from spinal muscular atrophy.
Hearing this petition, the court said that recently around Rs 18 crore was raised through crowdfunding for the treatment of a child suffering from a rare disease. A single bench of Justice PB Suresh Kumar said, we have no forum to regulate such funding. The state has made several efforts to raise funds for the treatment of rare diseases. This court has also issued a decision in this regard, but it was not fruitful.
This happened due to lack of accountability
The court said that this is due to lack of publicity. The court said that this accountability is not fixed and citizens do not have faith in the system. They feel that their money will be lost somewhere in the bureaucracy. The system should be made accountable, transparent. It has to be efficient. The court said that we need something workable. We have seen a report that such a campaign was run by a Delhi government. This campaign proved to be very good and was successful. The court said that they are raising crores of rupees through their scheme.
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