HC directs state govt to implement regulative measures for crowdfunding towards rare diseases treatment in children

KOCHI: Kerala High Court on Wednesday directed the State Government to design a platform to implement regulative measures for crowdfunding towards treatment for children affected with rare diseases.

The Court asked the state, "if private individuals can raise such a huge amount in a matter of weeks, why can't the State do the same?"

The court gave the directions while hearing a plea filed by a father seeking assistance from the State Government to import a life-saving drug from the US for his son who was suffering from Spinal Muscular Atrophy.

While hearing this plea, Court noted that around Rs 18 crore were raised recently through crowdfunding for the treatment of a child suffering from a rare disease.

Single Bench of Justice PB Suresh Kumar added, "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 a judgment in this regard, but they have not been fruitful. This occurred due to a lack of publicity. 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".

"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," Court said.