Ethical issues in the care of persons living with haemophilia in India

Uma Jadhav, Kanchan Mukherjee, Anil Lalwani

Abstract

The recent series of ad interim orders issued by the Bombay High Court under ordinary original civil jurisdiction following public interest litigation (PIL) on the provision of free clotting factor concentrates for persons living with haemophilia, especially those below the poverty line and emergency cases, highlights the need to think about the ethicality of various aspects of access to medicine and the rights of patients suffering from rare diseases from the public health perspective. The PIL (number 82/2012) [Vinay Vijay Nair & Ors vs. Department of Health, State of Maharashtra & Ors), which calls for free treatment for all haemophiliacs who go to the designated hospitals, was followed by the issuance of five ad interim orders (July 19, 2012, October 22, 2012, November 6, 2012, January 24, 2013, and March 19, 2013).

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