Ethical issues in the care of persons living with haemophilia in India.
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 and Ors vs. Department of Health, State of Maharashtra and 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).
Doctoral Candidate; Community Development Officer, School of Health Systems Studies (SHSS), Tata Institute of Social Sciences, VN Purav Marg, Deonar, Mumbai 400 088; K E M Hospital, Acharya Donde Marg, Mumbai 400 012 India.
Uma
U
Jadhav
Associate Professor, SHSS, Tata Institute of Social Sciences, VN Purav Marg, Deonar, Mumbai 400 088 India.
Kanchan
K
Mukherjee
Former President, Haemophilia Federation of India; Secretary, Haemophilia Society (Pune Chapter), Lohade Hospital, Chinchwad, Pune 411019 India.
Anil
A
Lalwani
D004630:Emergencies; D004638:Emergency Treatment / Q000191:economics / Q000941:ethics*; D006297:Health Services Accessibility / Q000191:economics / Q000941:ethics* / Q000331:legislation & jurisprudence; D006467:Hemophilia A / Q000188:drug therapy*; D006490:Hemostatics / Q000627:therapeutic use*; D006761:Hospitals / Q000941:ethics*; D006801:Humans; D007194:India; D007603:Jurisprudence; D028701:Patient Rights; D011203:Poverty; D011634:Public Health; D035583:Rare Diseases
D006490:Hemostatics