Haemophilia care in India: innovations and integrations by various chapters of Haemophilia Federation of India (HFI).
Care of persons with haemophilia (PWH) in western countries is the responsibility of the government of those countries with or without funding from health insurers. Haemophilia societies in western countries work as pressure groups to ensure better care, and they disseminate information on the disease and some of the societies even support medical research for haemophilia care. In India, Haemophilia Federation of India (HFI) was established in 1982 with few haemophilia families and sympathizers of their cause; subsequently more than 65 chapters involving more than 12 500 PWH came up under HFI. HFI and its constituent chapters are unique in the world in the sense that they are not only trying to involve state and federal government to take responsibility for delivering haemophilia care, but they are also using various innovative and integrative techniques to deliver haemophilia care to PWH themselves, till the time federal and state governments of the country make suitable arrangement for their care. In this study, several of these approaches are discussed with the understanding that 80% of worlds' haemophilia population needs similar help, and the national haemophilia organizations (NMO) of various developing countries will find some of the approaches useful and adaptable to their own circumstances.
National Institute of Immunohaematology, KEM Hospital, Parel, Mumbai, India. kanjakshjaghosh@hotmail.com
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D002202:Capital Financing / Q000379:methods; D003695:Delivery of Health Care / Q000191:economics / Q000458:organization & administration*; D003906:Developing Countries; D058016:Health Facility Administration; D006285:Health Planning; D006467:Hemophilia A / Q000175:diagnosis / Q000628:therapy*; D002836:Hemophilia B / Q000175:diagnosis / Q000628:therapy*; D006801:Humans; D007194:India