National Thalassaemia Welfare Society organises 25thInternational Thalassaemia Day in New Delhi

Talks were held on policies with regards to thalassaemia patients and steps being taken to change policies recruiting thalassaemia patients

National Thalassaemia Welfare Society organised the “25th International Thalassaemia Day” at Constitution Club, New Delhi. The event was inaugurated by chief guest TD Dhariyal Commissioner Disability, Govt of Delhi. Dhariyal threw light on thalassaemia and RPWD Act 2016. He said that “Thalassaemia, sickle cell anaemia and haemophilia have been included in the RPWD Act 2016. Now thalassaemics come under 5 per cent reservations for higher education under disability. However they have no reservation in employment but now they cannot be refused or discriminated on health grounds. Thalassaemics will be entitled to all the benefits under schemes made for disabled persons except reservations in jobs.”

Vinita Srivastava National Senior consultant and co-ordinator Blood cell, NHM was guest of honour for the event. Srivastava apprised the audience that national guidelines on management and prevention of haemolobinopathies (Thalassaemia and 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 thalassaemics in each state.

The event also saw the support of corporates like TCS, Sodexo, HCL, SOIL, Walmart, Jaquar and RNA Technology and IP Attorneys who came together and talked about policies with regard to thalassaemia patients. The corporate reiterated that they are taking steps and changing policies recruiting thalassaemia patients.

Dr JS Arora shared his concerns on how Delhi was the first state where all the three chelating agents were always available, but we see only one or two chelators available. So, he requested Dr Arora, Additional Director Health Services and Programme Officer for Thalassaemia to take effective steps because due to erratic supply of drugs, iron overload of patients have risen to toxic levels.

Anurag Krishna CSR Lead, North, TCS, Sandeep Kumar Head HR Operations, Sodexo, Rajiv Kumar HR Head, HCL Infotech, AN Bhattacharya, Professor and Chair, Marketing and Social Innovation- SOIL, Sunita Patnaik, General Manager, Walmart, Kanwar Shamsher Relan, Head CSR, Jaquar Foundation and Rachna Bakhru, Partner, RNA Technology and IP Attorneys were present and more than 100 adult thalassaemics interacted with the corporate and discussed 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.