Listen to the survivor

Listen to the survivor

What has happened?

At the recent End TB India Summit in New Delhi, India’s prime minister declared its intention of eliminating the disease by 2025 —five years ahead of the global target. While the world applauded, those on the frontlines of India’s tuberculosis (TB) epidemic wondered if this indeed was possible anytime soon.

Question raised

Why our current approaches to addressing TB remain disempowering and paternalistic, ignoring its multiple dimensions?

• Stigma and shame: The disease remains highly stigmatised, and the TB-affected are forced into shameful silence due to mistaken perceptions about this disease
• Role of the other sectors: TB affects everyone, but partnerships to tackle it with communities, the private sector and other stakeholders remain weak
• Patient’s perspective needs to be taken into consideration: A patient’s dependence on the system is complete, though patients are expected to follow rules and meet the expectations set by others. Their needs, perspective and demands (if any) remain unarticulated.

Solutions presented

Listening to TB survivors and affected communities:  They are wise in ways that doctors are not and can tell us exactly what they need to fight TB

Free access:  Irrespective of where they seek care, all Indians should have access to free and accurate diagnosis and appropriate treatment. 

Dignity and respect: India should work to provide efficient care with dignity and respect

Upfront DST (drug susceptibility) for all patients:  With a missing million TB cases, and rising multi drug resistance (MDR), all TB patients will need an upfront drug susceptibility test (DST), to rapidly identify MDR TB and more severe forms of DR TB

Individualised regimens of treatment: Treatment should move away from standardised regimens to individualised regimens, choosing only drugs to which we know the bacteria is sensitive to

Availability of new drugs: We also need to urgently make available, under controlled conditions, new drugs that have the potential for curing the most resistant TB strains.

Involvement of the private sector: The government must give up its ambivalence and actively engage the private sector. That is where India’s real TB battle will be fought

Conclusion

In the end, our inability to act in time, will not just devastate India today but its future. It’s time to move beyond the rhetoric and seek participation from those that can help. India’s TB affected are speaking up and telling us what to do. Are we listening?