National Thalassemia Welfare Society Organized the 25th International Thalassemia Day New Delhi, May 6, 2019: National Thalassemia Patients Welfare Society organized the “25th International Thalassemia Day” yesterday at Constitution Club, New Delhi. The event was inaugurated by the Chief Guest Mr. TD Dhariyal, Commissioner Disability Govt. of Delhi. He threw light on Thalassemia and RPWD Act 2016. He said that “Thalassemia, Sickle Cell Anemia and hemophilia have been included in the RPWD Act 2016. Now, Thalassemics comes under 5% reservations for higher education under disability. However they have no reservation in employment but now they cannot be refused or discriminated on health grounds. Thalassemics will be entitled to all the benefits under schemes made for disabled persons except reservations in jobs.”
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Mrs. Vinita Srivastava National Senior consultant & co-ordinator Blood cell – NHM was Guest of honour for the event. Mrs. Vinita Srivastava apprised the audience that National guidelines on management and prevention of Haemolobinopathies (Thalassemia & Sickle Cell anaemia) were published in 2016, Policy draft is ready, may be notified any time after the elections. Funds have been released to provide adequate treatment to thalassemics in each state.
The event also saw the support of corporates such as TCS, Sodexo HCL, Soil, Walmart, Jaquar and RNA Technology & IP Attorneys who came together and talked about policies with regard to Thalassemia patients. The corporate reiterated that they are taking steps and changing policies recruiting Thalassemia patients.
While thanking Mrs. Vinita for taking initiatives to provide adequate treatment specially recently in Punjab & Karnataka, but unfortunately in most states still the condition is grim specially in Haryana, Delhi, UP & Bihar. Medicines availability is inadequate and irregular, said Dr. JS Arora, General Secretary, National Thalassemia Welfare Society
He further said that Guidelines to grade disability was notified in Jan 2018 were not rational, Criteria for grading disability in Thalassemia & Sickle cell Anaemia have been simplified by the experts but have not been notified. He requested Mrs. Vinita to get it notified at the earliest. Dr Arora also requested Mr TD Dhariyal commissioner disability to direct the disability boards to issue disability certificates within stipulated time.
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Dr J.S Arora shared his concerns on how Delhi was first state where all the three chelating agents were always available, but we see only one or two chelators available. So, He requested Dr SK Arora, Additional Director Health services and Programme officer for Thalassemia to take effective steps because due to erratic supply of drugs, iron overload of patients have risen to toxic level
Mr Anurag Krishna CSR Lead – North TCS, Mr Sandeep Kumar Head HR Operations – Sodexo, Mr Rajiv Kumar HR Head HCL infotech Ltd, Mr AN Bhattacharya, Professor & Chair, Marketing & Social Innovation- SOIL, Ms Sunita Patnaik General Manager Walmart, Mr Kanwar Shamsher Relan, Head CSR- Jaquar Foundation and Ms Rachna Bakhru, Partner – RNA Technology & IP Attorneys were present. and More than 100 adult thalassemics interacted with the corporate and discussed the critical issues.
Dr Arora requested the companies to take special care to adjust their treatment schedule like blood transfusion dates, investigations, admissions etc. with their work schedule.
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