The TIF Delegation visited India for the second time in 2016 on the occasion of the 8th National Conference on thalassaemia on the 17th and 18th of December. The conference was organised by the National Thalassaemia Welfare Society and the haematology Department of the All India Institute of Medical Science (AIIMS). Representing TIF were Dr Michael Angastiniotis and Prof Suthat Fucharoen. During the conference a capacity building workshop was also organised, attended by associations, NGOs and patients. TIF collaborator in India, Mr Vinay Shetty, was awarded the “Best Social Worker Award” during the opening ceremony.
Progress in India was made in the following:
- The Disability Bill has been approved by parliament. This includes thalassaemia patients who will benefit through various social privileges.
- The program initiated by TIF to create State task forces in order to prepare a Charter of Demands, has now expanded to other States: Tamil Nadu, Karnataka, Telengana, and Goa – now in the process of creating a task force
- Future projects will be in Odisha and Jharkhand
- Four new thalassaemia centres are opening in Maharashtra
In addition, meetings were held with Ms Shobha Tuli and Ms Vineeta Shrivastava of the Ministry of Health.
More developments in India:
- A patient advocacy group (PAG) has been formed, since many adults patients are living in India, with needs go beyond the basic transfusion and chelation requirements. Services such as multi-disciplinary care, MRI, and social support are still available to few of these patients and much education and advocacy work needs to be done. A steering committee of 7 adult thalassaemia patients to lead the PAG has been formed. All members of this group are professionals and highly motivated. Anubha Taneja, a lawyer leads the group and she is an invited speaker at the opening ceremony of the International Conference in November.
2. The work in many states continues and the Thalassaemia Newsletter is being revived to keep all the national and international community informed about developments.