Implement National Policy on Rare Diseases: HC to Centre

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.