PATIENT NETWORK

Unlike other diseases, where patients play a prominent role in policy and program design as well as implementation and monitoring, the involvement of TB survivors in India’s TB control efforts is extremely limited.

there is an urgent need to empower survivors to become spokespersons for the needs of the TB affected. They need to participate extensively in policy formulation and program design. India needs patient champions to help strengthen program implementation and address issues of deep-seated stigma that continue to persist.

Given this context, we initiated the formation of a TB Network that will be managed by survivors and patients themselves to raise issues relevant to them and identify potential solutions. This network of patients also works as advocates and spokespersons to tackle TB at the national and grassroots level.

These survivors will come from diverse states, economic strata, and experiences and will work together to discuss and highlight issues in TB from the patient perspective. The network will pave way for patients through a community representative to highlight challenges faced viz TB diagnosis, treatment and service delivery. 


BROADLY, THE NETWORK AIMS TO ACHIEVE THE FOLLOWING:

  • Work together to identify key issues around TB and formulate recommendations for the government.

  • Conduct outreach to the government (national and state) on these issues

  • Work consistently to raise awareness among communities and particularly the private sector

  • Uphold and protect patient rights and highlight patient expectations

  • Highlight cases of neglect, poor delivery, patient maltreatment

  • Engage all key stakeholders- politicians, officials, media on key issues

  • Provide support to patients on diagnosis, treatment, nutrition and other challenges associated with surviving TB