PIL in SC over committee formation for rare diseases’ treatment

New Delhi: A Public Interest Litigation (PIL) has been filed in the Supreme Court against the Centre and state governments for “failing to constitute a state-level technical-cum-administrative committee, and to identify designated hospitals for treatment of people suffering from rare diseases.”

An NGO approached the apex court, stating that failure on the part of governments on the issue, violates the fundamental right to health of patients suffering from rare diseases.

Advocate Ashok Agarwal, appearing for the NGO, said, “The petition was filed against the failure on part of Centre, state governments and Union Territories (UTs) to constitute state-level technical-cum administrative committee and to identify designated hospital for treatment of rare disease in terms of National Policy for Treatment of Rare Diseases 2017 (NPTRD) and further to start treatment of patients and provide supportive care.”

The NPTRD was constituted by the Centre on May 25 last year after the parents of children suffering from rare diseases, filed petitions in the Delhi High Court, seeking directions that the government provide treatment to their children for free. Following this, the High Court directed the Ministry of Health and Family Welfare to frame a national policy on the treatment of rare diseases.

The petition explained rare diseases as, in most cases, serious, chronic, debilitating and life-threatening illnesses that often require long-term and specialised treatments. It added that so far about 450 rare diseases have been recorded in India.

“A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. It is estimated that globally around 6,000 to 8,000 rare diseases exist with new rare diseases being reported in the medical literature regularly. However, 80 per cent of all rare disease patients are generic in nature and are affected by approximately 350 rare diseases,” the petition stated.

The petitioner added that the Centre had written to principal secretary, health and welfare, of all states and Union Territories “to take necessary steps for implementation of the policy and requested them to constitute the state-level technical-cum administrative committee to examine each case and if found eligible for financial assistance under the policy, recommendation should be made to Union Minister of Health and Family Welfare for its decision”.

The NGO further said that till date no states or Union Territories except Jharkhand, Sikkim and Delhi have constituted the committee and designated hospital.