The Supreme Court on Monday sought to know the stand of the Centre and that of all States and Union Territories barring Delhi, Jharkhand and Sikkim on constitution of a committee to examine the case of patients of rare diseases for financial assistance and identifying hospitals for their diagnosis and treatment under the National Policy for Treatment of Rare Diseases, 2017.

A bench headed by Chief Justice Ranjan Gogoi issued notices on a PIL moved by NGO ‘Organization for Rare Diseases India (ORDI) seeking implementation of the policy which envisages setting up of a technical cum administrative committee within the ministry of health and family welfare, both at the Central and the State levels, for handling of the corpus fund created for treatment of rare diseases.

In the PIL, advocate and social activist Ashok Agarwal, who has been contesting legal battles for free medical treatment for people suffering with rare diseases like Gaucher, highlighted failure on part of the governments to constitute state level technical-cum-administrative committee and to identify designated hospitals for treatment of rare diseases in terms of the national policy.

The petitioner also rued the failure of the respective governments to provide treatment and supportive care to the patients of rare diseases in violation of Article 14, 21, 41 and 47 of the Constitution read with the provisions of the national policy, 2017.

So far, about 450 rare diseases have been recorded in India. Globally around 6,000 to 8,000 rare diseases exist.

The cost of treatment of rare diseases is prohibitively high requiring periodic therapies.

It was only after Agarwal moved Delhi High Court seeking free treatment for patients of rare diseases from economically weaker sections that the high court directed Centre to frame a national policy.

The Centre then approved the national policy for treatment of rare diseases on May 25, 2017. This policy contained a specific clause providing for technical-cum-administrative committee at state level for the state corpus and expressly stated that the Central and the State committees will identify and accredit institutions that will carry out diagnosis of rare diseases besides identifying institutions that will provide treatment for rare diseases and institutions which will both diagnose and treat.

In March, 2018, the Centre wrote to all states and the Union Territories to constitute such committees to examine each case and if found eligible for financial assistance, send a recommendation to the Union Minister of Health and Family Welfare.

The Petitioner then wrote to Chief Secretaries of all States and Union Territories in July, 2018 requesting them to do what is needed. The letter was followed by a legal notice through Agarwal.

Except Jharkhand and Sikkim, none of the States or UTs responded to the legal notice.

Jharkhand informed that it has formed a committee and have designated hospital at Ranchi for treatment of rare diseases. Sikkim also reverted in like manner. Meanwhile, the petitioner said it is within its personal knowledge that the Delhi government has constituted such committee and identified Loknayak hospital for treatment of rare diseases.

The National Policy defines Rare Disease as a health condition of a particularly low relevance that affects a small number of people compared with other prevalent diseases in the general population. Rare diseases include genetic diseases, rare cancers, infectious tropic diseases and degenerative diseases. 80 per cent of rare diseases are genetic in origin.

The policy goes beyond treatment funding and takes a more holistic approach towards rare diseases encompassing suggestions towards prevention, awareness, training, research, and development in diagnosis, development and manufacturing of drugs at affordable prices, provision of insurance coverage etc.

It also recommends creating provision for online applications for funding from the corpus fund and creating a patient registry for rare diseases housed in Indian Council of Medical Research.

As part of long term measures, the policy envisages taking legal and other measures to control the prices of drugs for rare diseases to ensure its affordability and for health system sustainability, ensuring insurance coverage for rare genetic disorders.