Kerala High Court seeks regulations from State for rare diseases treatment crowdfunding

On Wednesday, October 6, the Kerala High Court ordered the state government to create a platform to adopt regulatory procedures for crowdfunding for children 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 issued the orders while hearing a father's petition for help from the state government in importing a life-saving medicine from the United States for his son, who suffers from Spinal Muscular Atrophy.

During the hearing on this plea, the Court observed that nearly Rs 18 crore had just been raised through crowdfunding for the treatment of a child with a rare condition. There is no framework to govern such funding, according to Justice PB Suresh Kumar of the Single Bench. The state has attempted to raise cash for the treatment of uncommon diseases on various occasions. This Court has even issued a ruling on the subject, yet it has had no effect. This happened as a result of a lack of publicity. Citizens have lost faith in the system, believing that their money will be wasted in the bureaucratic process, and they want something more accountable, transparent, and efficient, he said.

Kerala High Court directs state to implement regulations for crowdfunding towards rare diseases

"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. 

What are the symptoms of Spinal muscular atrophy?

Spinal muscular atrophy (SMA) is a series of hereditary illnesses in which a person's muscles lose control due to nerve cell loss in the spinal cord and brain stem. It is a form of motor neuron disease and a neurological illness. Muscle loss and weakness are symptoms of spinal muscular atrophy. Standing, walking, controlling head motions, and, in certain situations, breathing and swallowing might be challenging for those with SMA. SMA affects some people from birth, while others develop later in adulthood. Some types have an impact on life expectancy. According to Genetics Home Reference, SMA affects one out of every 8,000–10,000 persons on the planet. SMA has no cure, although newer medications like nusinersen (Spinraza) and onasemnogene abeparvovec-xioi (Zolgensma) may help reduce the disease's progression.

With inputs from ANI

IMAGE: SHUTTERSTOCK