Rare disease therapies are often difficult to access, whether that is due to price, a patient’s location, or another factor. Because of these obstacles, many rare disease patients find themselves turning to crowdfunding to afford their treatment. In an effort to ease some of this burden and help patients, the Kerala High Court has instructed the state government to create a platform that will place regulative measures on crowdfunding for children with rare disorders.
About the Ruling
The High Court decided their ruling after hearing from a father of a child with a rare disease. The man’s son has spinal muscular atrophy (SMA) and is in need of treatment from the United States. This therapy would save the boy’s life, leading his father to seek help from the State Government.
While hearing this case, the High Court pointed out that Rs 18 crore ($2,395,800 USD) had been raised through crowdfunding in a similar case. They wondered why the state cannot do anything to aid in this process through regulation.
The lack of action was partially blamed on a lack of awareness. Many people aren’t aware of rare diseases or the obstacles that stand in the way of treatment. Additionally, the people do not necessarily have faith in their government when it comes to their money and the system. If these regulations are going to be successful, they must be transparent, efficient, and accountable.
The Court also pointed out regulations put in place by the Dehli Government, which led to great success. Something similar would lead to lots of money raised for rare disease patients in India, hopefully.
In the end, the Court sums up the situation with this:
if private individuals can raise such a huge amount in a matter of weeks, why can’t the State do the same?
Find the source article here.