From TB Survivors to TB Champions – standing together to end TB
We are a representative group of TB Survivors and advocates from across India. We met on the 12th of March in New Delhi to discuss the issues that are important to us as people affected by TB.
We had the opportunity to attend the Delhi End TB Summit on 13 March 2018 and were witness to India’s unparalleled political commitment to end TB, and the participation of the Honourable Prime Minister of India in the inaugural session. The Prime Minister’s address underlined the crucial role of the affected community in dispelling myths, reducing stigma around TB and in supporting the government to address gaps within the health system for improved access to TB services.
There is no doubting India’s ambition to end TB by 2025, five years ahead of the global target. Now is the time for us to address all the issues that need to be tackled if we are to win the fight against TB.
We therefore want to bring to the attention of key decision-makers and stakeholders the following issues that we feel require immediate attention:
• The urgent need for TB counsellors at all healthcare settings, to provide TB patients and families with the right information and support
• Uniform and enhanced access to nutrition support for all those affected by TB. We call on state governments to support and supplement the Government of India’s commitment of Rs. 500 per month per person through the treatment period
• Access to new technologies and treatment regimens for all those affected by TB
• Timely disbursement of all promised benefits and a proactive drive for better awareness of available social support mechanisms for people affected by TB
• The introduction of effective community monitoring mechanisms to pre-empt any issues that may delay diagnosis and treatment, such as drug stock-outs or the non-availability of diagnostic supplies and other consumables
• Increased investment in research on TB to identify better tools for TB diagnosis and treatment
• The adoption of non-stigmatising language, behaviour and practices by all stakeholders including public and private healthcare providers
• Overall, a people-centred approach to TB care and prevention in India, with survivors and affected communities at the forefront.
We are committed to working towards a TB-free India with the National TB programme and our respective state and local governments.
We see ourselves playing a crucial role as ambassadors who can work towards reducing the stigma and discrimination associated with this disease.
We – over twenty five lakh individuals like us every year – are the country’s best resource to win the fight against TB.
To those whose lives have been affected by TB, we would like to say – we can defeat TB. Having TB is nothing to be ashamed of. Let us speak up and join the fight against TB.
Towards TB-free communities and a TB-free India.
TB survivors and affected community members:
1. Abhishek Kumar, Bihar
2. Alma Ram, Punjab
3. Amit Kumar Kujur, New Delhi
4. Amogh Mangalore, Maharashtra
5. Bhootnath Lohra, Jharkhand
6. Bibhuti Bhusan Sahu, Odisha
7. Blessina Kumar, New Delhi
8. Cedric Fernandes, Maharashtra
9. Chinmay Modi, New Delhi
10. Dean Lewis, Maharashtra
11. Doloria Sosan Bilung, Jharkhand
12. Gopa Kumar, New Delhi
13. Kiran, New Delhi
14. Mona Balani, New Delhi
15. Monalisha Aich, Odisha
16. Mutum Tilak Singh, Manipur
17. Prakash Kumar Patanaik, Odisha
18. Praveen, New Delhi
19. Raghavan Gopakumar, New Delhi
20. Rahul, New Delhi
21. Reeta Sahoo, Odisha
22. Rekha Verma, Jharkhand
23. Rhea Lobo, Maharashtra
24. Ronalija Aich, Odisha
25. Satyendra Nath Jha, Bihar
26. Shakuntala, New Delhi
27. Smriti Kumari, Bihar
28. Sudeshwar Singh, Bihar
29. Suman Anand, Bihar
30. Tukuna Jena, Odisha
31. Tupeshwari Devi, Jharkhand
32. Upasana, New Delhi
33. Upendra Kumar, Jharkhand
34. Yogesh Bhalerao, Maharashtra
Civil society representatives:
35. Anupama Srinivasan, Tamil Nadu/New Delhi
36. Khasim Sayyad, New Delhi
37. Nalini Krishnan, Tamil Nadu
38. Ramya Ananthakrishnan, Tamil Nadu
39. Smrity Kumar, New Delhi
40. Subrat Mohanty, New Delhi
41. Sunitha Varghese, Uttar Pradesh