There were 32 people seated in a circle, on chairs hastily pulled together, in the middle of a large room. There was absolute silence when Arun began telling his story - the story of how tuberculosis (TB) had affected his life.
Seven years ago, Arun had lost his father to TB. A delayed diagnosis and poor management had resulted in a death from what is a fully curable disease. Five years later, Arun was diagnosed with TB, much to the distress and anxiety of his family.
It was Mona’s turn next. She spoke of how she’d lost her husband to TB. And then her son. Of how she’d been diagnosed and treated for TB several times. Of how she had not given up hope. Of how she hoped to inspire and motivate others whose lives had also been devastated by the disease.
Mildred from the Philippines spoke of her decade-long battle with multi-drug resistant TB. She was 18 when she was diagnosed with TB and 28 when finally declared cured. Mildred told us about how she almost gave up hope several times. She spoke of how she’d met her husband, John, while being treated for TB, the emotional support he had offered and the love story that followed.
Arun, Mona and Mildred were among a group of thirty-two TB survivors from six countries around South-East Asia, who gathered in New Delhi earlier this year for a workshop organised by REACH in partnership with U.S. Agency for International Development (USAID) and the Geneva-based Stop TB Partnership. The workshop was designed to support TB survivors to become more effective advocates and to encourage them to examine their personal experiences within the global, regional and national public health contexts.
In India, over 1300 people die of TB every day. India bears the world’s highest burden of TB, with approximately a quarter of all TB cases in the world. In 2015, close to five lakh people died of TB in India and every year, an estimated 1.3 lakh people are affected by drug-resistant TB (TB India Report 2017). The numbers are staggering.
But despite the enormity and scale of the problem, TB rarely finds mention in public discourse. We do not hear or read about TB in the news as often as we should, and few of us know the extent of the impact TB has. I’m often been asked by well-informed friends and family – “you work on TB? But isn’t it eradicated from India?”
One reason for this shroud of silence around TB is the stigma, of course. Stigma is all pervasive, whether at home, at work or in the community. Stigma can and does cause people affected by TB to lose jobs, be thrown out of their homes (especially if they are women) or be isolated within their families. Most of all, stigma prevents people like Arun, Mona and Mildred from boldly and opening telling their stories.
Public health needs heroes. We need people like Arun, Mona and Mildred – and many others – to be part of and lead the conversation around TB. Their struggles must inspire others. Their stories must inform our policies. As TB Champions, through their stories and testimonials, they can increase the visibility of TB, help improve our understanding of the disease and help destigmatize the TB experience.
At the workshop held in April earlier this year, we focused on how each TB survivor could become a powerful advocate for TB, in his or her own way, by focusing on whatever aspect of the TB response was most important to them. For some, getting an early and accurate diagnosis was priority. Some others saw the lack of access to counseling and information on TB during the treatment period as the real gap. For others, it was the need for proper nutrition or support from their families.
Storytelling was also an important part of the workshop. We talked about how important it is to tell personal stories in an impactful manner, in a way that would hook readers and viewers. Over the four days of the workshop, the TB Champions were generous in sharing their own stories and took time to record short video testimonials.
It is this video series that we are proud to present and share with you, through our partnership with The News Minute.
We do hope you will watch and share these powerful and personal narratives, and join the fight against TB in India.
Anupama Srinivasan works with REACH, a Chennai-based non-profit organization dedicated to the fight against TB for the last two decades.