One of world’s top ten causes of death, tuberculosis (TB) continues to remain one of the most infectious health hazards worldwide. Killing an estimated 1.4 million people in 2019, TB has emerged as a serious public health threat, impacting countries economically and socially. With over 2.7 million affected every year, India is home to the highest number of TB cases in the world. In 2019, over 400,000 people died of TB in India. In fact, everyday, 1,400 Indians die of TB — that means one preventable TB death every minute.
TB also has a tremendous social and economic impact that cannot be ignored. Every year, India suffers a staggering economic burden of USD 24 billion on account of TB, pushing many families into poverty. Stigma and discrimination are some of the many facets of TB.
On top of this, the emergence of Covid-19 aggravated the situation. With all healthcare resources being allocated to Covid-19 services, TB care took a back seat. In fact, India saw a 60% decline in TB notifications, widening the gap in ‘missing’ cases.
This is a story of a TB survivor from Kolkata, India, a journey of fighting and defeating TB. She experienced the side-effects of TB medication, difficulties of undergoing treatment, the mental and psychological impact, and what she plans to do now.
Rima, Kolkata
A student of Journalism and Mass Communication, 19-year-old Rima is a bright and passionate young woman. In early 2019, she began experiencing persistent fever, nausea, uneasiness and swelling in the neck. A week later, her parents took her to a local ear nose throat (ENT) specialist, who prescribed a symptomatic treatment to her. However, her symptoms only worsened.
Rima decided to seek a second opinion and visited another ENT specialist who prescribed some more tests and medicines. However, two weeks later and with no respite in sight, Rima’s father decided to visit their family doctor at Peerless Hospital. Dr Chandramouli Bhattacharya conducted multiple investigations including testing the swelling in the neck region by Fine Needle Aspiration Cytology (FNAC). It confirmed TB of the lymph node.
The news of the diagnosis was not easy to deal with, both for Rima and her family. “I thought why this had happened to me… I wondered about my friends and their reaction to my disease. I thought they all would abandon me now and that I would never be ‘normal’ again.” Stigma is a social side-effect of TB, taking twice the toll on women than men. Every year, many TB affected families are driven into isolation, often leading to loss of livelihoods and abandonment. What does that mean? That stigma and impact on general health among affected children and adolescents can increase dropout rates from schools and colleges, leading to interrupted education.
As if this wasn’t enough, Rima’s TB treatment was also fraught with side-effects, including red-coloured urine, vomiting, vertigo, drowsiness, weakness and numbness in limbs. She lost her appetite, which made her weak and feeble. Then there was the mental agony that she had to deal with. She used to cry for prolonged periods of time. Rima spiralled into depression.
It was at this time that the treatment coordinator from JEET, on Dr Chandramouli’s behest, reached out to Rima’s family. Ms Jayanti Mandal counselled and encouraged Rima to share the news of her diagnosis with her friends and extended family. When Rima reluctantly shared the news, she was pleasantly surprised to find that everyone accepted her and her diagnosis with open arms. She heaved a sigh of relief.
The side-effects exhausted Rima. Thankfully, both her family and Jayanti helped her in coping. For instance, her mother encouraged Rima to establish contact with her friends and take up painting again. Jayanti provided support in helping her get back on her feet by taking small steps everyday. And slowly, with the help of a balanced diet and support from her family, along with regular treatment, Rima began her journey towards recovery.
In fact, all her family members were also screened for TB. Thankfully, all tested negative. With the help of Jayanti, Rima also enrolled herself in Nikshay Poshan Yojana — a Government of India initiative to provide Rs 500 to every TB patient in the public sector to support their nutritional needs.
Today, Rima has recovered completely. Now, she wants to spread awareness on TB and encourage families to support TB patients and not shun them. “People will take treatment and get cured. But it is the care and love from families and friends that is critical in recovery for any patient. I believe that my degree in Mass Communication will help me in reaching out and talking to people with the purpose to spread awareness on TB.”
This is one story out of a million. This World TB Day (March 24) has provided a window of opportunity to mobilise social and political commitment as well as accelerated progress to end TB. The theme for 2021 is ‘Clock is Ticking’, which underscores the urgency with which India needs to address TB. Not only the political leadership, but we as citizens have a huge role to play in making India TB-free by 2025. The urgent need of the hour is awareness, which is only possible through conversations.
Start a campaign in your schools, colleges and neighbourhoods, and talk about TB, its prevention, cure and impact. Educational interventions maybe necessary including efforts to reduce stigma, address social isolation and minimise unnecessary exclusion from school. Peer support groups that help adolescents with HIV to remain engaged with care may be beneficial, alongside psychosocial support and options for confidential consultation.
While we have come a long way, but we still have a long way to go. Let’s make India TB free by 2025. TB Haarega, Desh Jeetega!