Delhi High Court Directs Centre To Immediately Notify Crowd Funding Platform For Treatment Of Rare Diseases

Justice Rekha Palli has ordered that failure to notify a platform by the next date, i.e., August 4, will lead to suo moto action for wilful non-compliance of its orders.

The development comes in a batch of pleas related to the Draft National Policy for Rare Disease, 2020 and medical aid for patients suffering from rare diseases.

The Centre has claimed that it cannot fully finance the treatment of all high cost rare diseases, but the gap can be filled by seeking donations from prospective individuals or corporate donors, who are willing to support the cost of such diseases.

For this purpose, it had proposed to explore crowd funding as an option to address affordability concerns.

On the last date, the Court had observed that patients suffering from a rare disease ought not to be deprived of treatment owing just to the exorbitant price of the drug or treatment required for the said rare disease.

The Court had considered the fact that the Right to Health and Healthcare falls within the ambit of the Right to Life, as recognised by the Supreme Court. As such, the Right to Health and Healthcare being a fundamental Right under Article 21 of the Constitution of India, it is imperative that the society in general, and the authorities in particular, ensures that such a right of a patient is safeguarded and not compromised, even with a small window of improving their chances of survival or bettering their quality of life.

Considering the urgency in the matter, the digital platform for crowdfunding was directed to be made operational on or before 31st March, 2021.

Further, time was granted until July 31, 2021 to finalise and put in public domain, the National Policy.

During the course of hearing today, Advocate Rahul Malhotra informed the Bench that despite the order dated January 28, 2021, the digital platform was not made operational till date.

"The Respondents are in defiance of this Court's order. Government has already taken off its hand. They don't want to treat the children and have come with an easy excuse of lack of funds. At the least they should ensure that a digital platform is in place," Malhotra submitted.

Taking a serious note of non-compliance by the Centre, Justice Palli remarked,

"What is this? Why is the platform not functional? Little children cannot be abandoned. It's not fair."

As ASG Chetan Sharma, appearing for the Respondent, was not in a position to confirm as to whether the platform is made operational or not, the Judge orally remarked, "I will have to say you are in contempt. I am not issuing notice but I have to observe."

The Court made it clear that if by next date the platform is not made functional, it will be constrained to initiate suo moto action for wilful non-compliance of its order.

Case Title: Master Arnesh Shaw v. Union of India & Anr.