Excelsior Correspondent
JAMMU, July 29: To reach a consensus on uniform policy and protocols for optimal Hemophilia care in India a Hemophilia & Health Collective of North India (HHCN) has been constituted.
Dr Naresh Gupta, former Director Professor Medicine MAMC and Medical Advisor in Haemophilia Management and authority on Haemophilia was elected as its chairperson. Dr K K Kaul former Professor and Head Pathology GMC, Jammu , Medical Advisor J&K Thalassaemia Welfare Society was elected as president. Dr Sheikh Bilal Ahmed Professor & Head Pathology , Blood Bank and Immunohaematology & Haemophilia Care Centre GMC, Srinagar as vice president.
Dr Girish Kumar was elected as coordinator and Dr Sunita Agarwal Professor MAMC Delhi as secretary. Dr Varun Kaul Associate Professor Pediatrics & Nodal Officer Haemophilia & Thalassaemia Care Centres at GGS Medical College & Hospital Faridkot , Punjab as joint secretary, Prof. Sujata E Matheus of RML Hospital New Delhi as treasurer. Dr Rubby Khan , Medical Consultant, NHM Bhopal , Dr T S Reddy and Dr Sumant Bhardwaj were other members.
Later HHCN also hosted first ever Haemophilia conclave 2023 at India Habitat Centre, New Delhi. It was attended by experts from different specialties.
HHCN president Dr K K Kaul in his inaugural address highlighted the need and importance of uniform treatment policy and protocol on all aspects of Haemophilia care. He informed that despite the guidelines provided by the World Federation of Haemophilia (WFH) for treatment centres with or without budgetary constraints, still the treatment practices vary considerably around the world related to access to adequate treatment. By and large many regions of our country have the same situation. He also identified various areas on which the team HHCN has to work which will address important issues pertaining to people with Haemophilia being managed at various treatment centers in North India.
Chairman, Dr Naresh Gupta said since a lack of diagnostic and treatment facilities along with low level of awareness about Haemophilia is a major hurdle in its management and main aim of the conclave is to find solutions and reach a consensus on policy and protocols for optimal care in our country.
The speakers said in India there is no epidemiological data about Haemophilia but it is expected that around 100,000 to 1,30,000 severe Haemophilia cases are in our country but the total number registered with Haemophilia in India is around 19000(ICMR2019/2023).
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