Implement National Policy on rare diseases: HC to Centre

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New Delhi: The Delhi High Court today directed the Centre to implement without delay its National Policy for Treatment of Rare Diseases, which was formulated on the court's direction last year.

The report was tabled before Justice Manmohan who was hearing pleas by several individuals suffering from rare diseases and were insured with the Employee's State Insurance Corporation (ESIC) which, as per them, was not willing to foot the cost of treatment.

Central government standing counsel Shiva Lakhsmi, who appeared for the Ministry of Health and Family Welfare, submitted the policy before the court, which asked for a presentation on how its implementation would be hassle free for patients.

The ministry will now give a presentation on how the policy would be implemented on the next date of hearing on August four.

The policy was placed before the court pursuant to its direction to the government in November last to come up with a policy for patient suffering from rare diseases like Gaucher, a genetic disorder due to which fat is not properly metabolised.

As per the policy, the government proposes to set up an initial corpus of Rs 100 crore for funding treatment of rare genetic diseases.

A similar fund would be set up at the state levels in which 60 per cent contribution would be by the Centre, the policy said.

It also said that the fund would be dedicated to rare genetic disorders but not used for treatment of rare blood disorders like hemophilia, thalassemia and sickle cell anaemia or rare cancers as there were separate government programmes for them.

"To ensure sustainability of the corpus, the Public Sector Undertakings (PSUs) and corporate houses, to be encouraged to make contributions as per the Companies Act as well as the provisions of the Companies (Corporate Social Responsibility Policy) Rules, 2014 (CSR Rules)," the policy said.

It has also recommended the Ministry of Chemicals and Fertilisers to set up a cell within the Department of Pharmaceuticals to promote drug development and affordability of drugs for rare diseases.

Under the policy, the Department of Financial Services has been asked to explore, on the basis of actuarial studies, "whether insurance sector should cover cost of treatment of rare diseases and amend the Insurance Act accordingly".

It also recommended that patients, suffering from rare genetic disorders, who belong to below the poverty line be given free and supportive services in private or government hospitals.