The Delhi High Court emphasized that the right to health is an essential component of the right to life, as stated in the Indian Constitution, in its recent ruling on a collection of more than 100 petitions submitted on behalf of individuals with uncommon diseases. Justice Prathiba M Singh authorized the Central Government to establish a National Rare Disease Fund (NRDF) with a budget of ₹974 crore. The goal of this fund is to help people with uncommon diseases afford their medical care.
The Court made it clear that there would be strict oversight of the funds’ distribution. It mandated that any fund distribution delays be found and addressed through an obligatory monthly review process, with the first review meeting to be set up within 30 days. Ensuring prompt support to patients in need is the goal of this measure.
The National Rare Disease Committee was founded on May 25, 2023, and the High Court ordered that it stay in operation for the following five years. The committee has been assigned the responsibility of supervising the execution of strategies and protocols for uncommon illnesses, guaranteeing that patients have sufficient assistance and care.
As suggested by the National Rare Disease Committee (NRDC) and subject to Ministry of Health approval, the Court mandated that the Union Government set aside ₹974 crore for the fiscal years 2024–25 and 2025–26 in addition to establishing the National Rare Disease Fund. Crucially, in order to guarantee that the monies stay accessible for their original purpose, the Court underlined that they cannot expire or be reimbursed for non-use.
A number of directives were added in the High Court’s ruling to ensure that all patients with rare diseases receive the appropriate medical care and prescription drugs. In response to the petitions demanding free treatment for patients with rare disorders, this decision was taken. It emphasizes how crucial it is to offer all individuals access to quality healthcare, regardless of how uncommon their ailment may be.
The Delhi High Court’s decision is a big step in the right direction for people with rare diseases, who frequently struggle to find medication that fits their budgets because these conditions are very expensive to manage. In particular, the Court seeks to protect the right to health for all people, especially those with uncommon and sometimes disregarded medical illnesses, by requiring the establishment of a special fund and guaranteeing appropriate oversight.
SOURCE :
ANI
