Excelsior Correspondent
JAMMU, Dec 25: The first national guidelines from the National Experts on Policy and Protocol for selecting the right drug product for optimal Haemophilia care in India were formally released by Haemophilia & Health Collective of North (HHCN) in New Delhi at a simple but impressive function.
Executive members of HHCN including Dr. Naresh Gupta (Chairperson) former Director Prof. Medicine, Advisor Haemophilia MAMC & Lok Nayak Hospital, New Delhi; Dr. Kuldeep Kumar Kaul (president HHCN), former Prof. & Head P.G. Deptt of Pathalogy, Chief Nodal Officer Haemophilia Care Centre G.M.C Jammu, Medical Advisor J&K Thalassaemia Welfare Society; Dr. Bilal Ahmed Sheikh (vice president), Prof & HOD Pathalogy Department & I/C Haemophilia Care Centre G.M.C Srinagar; Dr. Girish Kumar (coordinator) Associated Prof Pediatrics, Dr. Radhakrishnan G.M.C Hamirpur (Himachal Pradesh); Dr. Sunita Agarwal (secretary) Director Prof MAMC and I/C Haemophilia Care Centre, Lok Nayak Hospital New Delhi, Dr. Varun Kaul (joint secretary) Professor Paediatrics GGS Medical College Faridkot (Punjab); Dr. Sujata E Mathews (treasurer) Prof Medicine ABV Institute of Medical Sciences and Dr. R.M.L Hospital New Delhi; Dr. Ruby Khan, Deputy Director Blood Cell NHM / SBTC / Lab Services / BMW, Health Department Bhopal (Madhya Pradesh);Dr. T.S. Reddy, ex Director Union Public Service Commission Government of India and Dr. Sumant Bhardwaj, Advocate Supreme Court of India.
The function started with a panel discussion on “Optimal Haemophilia Care: Preparing & Shaping the future” In front of an audience comprising of doctors, journalists and some members of civil society. Discussions were also held in detail about whether the newer pharmacotherapy really are worth the money and resources.
The journalists asked several important questions and also sought various clarification regarding Haemophilia disease and treatment
The panel of experts who answered the questions were Dr. Naresh Gupta, Dr. K.K. Kaul, Dr. Sunita Agarwal, Dr. Ruby Khan and Dr. Varun Kaul. President Heamophilia Federation of India Premroop Alwa joined the press conference virtually.
President HHCN Dr. K.K. Kaul informed that Haemophilia is a rare genetic disease (bleeding disorder in which the blood doesn’t clot adequately) with disastrous outcome without treatment. The treatment is very costly but the treatment benefits are unparalleled and unsurpassable, by bringing quality of life back to these children and making them proud productive citizen like others. The small number of patients work to provide treatment to all, he added.
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