In India, two deaths occur every three minutes because of Tuberculosis (TB). The country carries the weight of the world’s highest TB patient count, comprising a staggering 31% of the global burden. However, according to Dr Tereza Kasaeva, Director of WHO’s Global TB Programme, India has “demonstrated significant high level political commitment and action towards ending the disease.”
Although treatable, fighting TB requires regular diagnosis, uninterrupted medication, nutrition, and mental strength to handle the debilitating side effects. A recent white paper, “Asia Pacific’s Patient Engagement Dilemma,” reveals that increased patient engagement can cultivate patients’ interest in, commitment to, and reliance on healthcare resources thereby improving the quality and length of patients’ lives, lowering the long-term cost of healthcare and even alleviating the economic burden in a society. However, people’s willingness to engage is tied to culture, trust, and personal beliefs.
When tuberculosis (TB) strikes, it induces shock and anxiety in those newly diagnosed, intensifying the fear of the unknown. Individuals often lack emotional support, a compassionate ally capable of answering questions, providing reassurance, and empathising with their journey through TB.
“This pressing need is now being met by trained TB survivors who are revolutionising patient engagement as frontline advocates.”
This pressing need is now being met by trained TB survivors who are revolutionising patient engagement as frontline advocates. They contribute to heightened disease awareness, early case detection, and improved patient compliance. As unwavering companions, these survivors bridge the gap between medical expertise and emotional well-being, offering tangible hope to people with TB. They reassure them that they too can be cured and go on to lead productive, meaningful lives.
In 2016, REACH, a non-profit organisation based in India and dedicated to combating tuberculosis for over two decades, began working systematically with TB survivors. With support from the United States Agency for International Development (USAID) and by collaborating closely with the Indian government’s public health initiative, the National TB Elimination Programme (NTEP), REACH has trained over 300 TB survivors and empowered them to become TB Champions.
At a policy level, the need for engaging TB Champions is now well recognised across India, with formal acknowledgment of the TB program in the National Strategic Plan and the recent Community Engagement guidelines. The NTEP is currently scaling up the training of TB Champions across India, with the goal of having at least two champions in every village. Considering the average population of 2,000 per village, this ambitious initiative aims to establish a cadre of 1,300,000 TB Champions throughout the country.
The relationships patients form with TB Champions are often profoundly personal. With empathy, TB Champions dispel fears, alleviate loneliness, and nurture resilience, constantly reminding individuals affected by TB that they have the capacity to overcome and thrive. Access to peer support has not only improved treatment outcomes for people with TB but has also served as an inspiration for them to become TB Champions themselves.
Here is the story of Neera Devi, a survivor who transformed into a TB champion at REACH.