"When I had TB, everyone abandoned me. My husband's family, my friends. The only person who was there for me was my brother. The only thing that kept me going was the will to live."Neera Devi, Multiple Drug-Resistant TB Survivor
Neera Devi is one of over 2.6 million people living with tuberculosis. And her experience - of being cut off, ostracised and isolated after contracting tuberculosis, is not an exception.
Rather, it's the norm. TB-related stigma is a massive problem around the world, and it leads to increased infections, delayed treatment, and even potentially deadly consequences.
World Tuberculosis Day falls on 24 March 2022. On this World TB Day we're going to cover why this stigma exists, how it affects patients, and why it needs to stop.
Where Does TB Stigma Exist?
To understand the stigma around TB, we need to first understand that more than 2/3rds of the roughly 10 million TB cases around the world come from developing parts of Asia and the sub-Saharan region.
Poverty tends to be conducive to TB transmission because of the associated cramped living conditions, lack of healthcare, and inadequate sanitation. TB stigma exists in most, if not all of these poorer/developing countries.
A 2021 study showed the impact of TB stigma in Uganda, with more than half of those sampled from an urban population having faced high TB stigma.
This included beliefs that TB and HIV were connected, that TB could be spread through sharing food and/or cigarettes, and even that you could spread TB through sexual contact.
Much of the TB stigma identified in Uganda, was also found in China, Indonesia, the Phillipines, Zambia, Sudan, Ethiopia, and other developing parts of the world.
The relationship between extreme wealth inequality and tuberculosis has been established in the past. This has been attributed, primarily, to the close contact living conditions which are conducive to spreading TB.
Why Does TB Stigma Exist?
A large part of TB-related stigma arises out of its perception as being connected to HIV and AIDS. In many parts of the world, the symptoms for the two are often interlinked and confused for each other.
In reality, in 2019, out of 2.6 million TB cases in India, only 71,000 cases had HIV and TB. That's 5.2 percent.
According to a 2010 study, the other factors making TB such a stigmatized disease are its associations with being contagious. The study says:
"The most common cause of TB stigma is the perceived risk of transmission from TB-infected individuals to susceptible community members. Depending on geographic region, however, TB is also stigmatized because of its associations with HIV, poverty, low social class, malnutrition, or disreputable behaviour."
Stigmatized individuals often face discrimination and a loss of status at the hands of the broader community, whose norms have caused them to be perceived as undesirable.
What Does TB Stigma Do?
The stigma around tuberculosis can lead to people avoiding treatment to avoid the social consequences of being identified as a person with TB. In most cases, even when people opt for treatment, they end up being ostracized.
Kamla Kishore, 43
Kamla Kishore, a farmer from Lucknow, contracted TB in 2012 but wasn't informed about it till much later. His doctor began treating him without informing him of his diagnosis.
When he eventually found out and began treatment in earnest, his friends abandoned him.
But his family stood by him, and he says that TB was one of the best things to happen to him. He works as a farmer and a DOTS provider now, trying to help others with TB.
DOTS refers to Directly Observed Therapy Shortcourse, a superivision/aid effort that enables TB patients to get the treatment they need and find the assistance they can get.
The 2010 study we mentioned earlier adds:
"Stigma is a process that begins when a particular trait or characteristic of an individual or group is identified as being undesirable or disvalued. The stigmatized individual often internalizes this sense of disvalue and adopts a set of self-regarding attitudes about the marked characteristic including shame, disgust, and guilt."
Rakesh Kumar, 30
Rakesh is a 30-year-old Civil Engineer from Delhi. He contracted Multi Drug Resistant TB in 2017 while he was caring for his brother who had the same. He refused to tell his parents about it.
He lost his brother to TB, and despite strong support from his family, he didn't want to put his parents through the experience again.
This is one of the few effects of stigmatizing tuberculosis - that people either avoid sharing their infection status, share their status with their loved ones and face isolation, or entirely avoid getting the treatment they need.
Rakesh confidently tells FIT now, "If I can do it, anyone can do it. If you know anyone who's suffering from TB and is in mental distress, give them my phone number. I'll talk to them."
Like Kamla Kishore, Rakesh is eager to help those living with TB and spread more awareness about tuberculosis and what people can do to help. Many survivors of TB who face isolation or alienation after catching the disease don't get the help they need, or they stop getting the treatment they need.
Neera Devi, 37
37-year-old Neera Devi's husband began treatment for tuberculosis, in Delhi, when he was diagnosed. However, he abandoned hope and moved back to his village in Uttar Pradesh. Soon after, he died by suicide.
While caring for him, like thousands of other TB patients, Neera was also infected. Unwilling to let the disease claim her life, she started her treatment with help from the government's Nikshay Poshan Yojana, determined to beat the disease.
Neera, now fully recovered, works as a tailor in Delhi and counsels other patients, motivating them to continue the treatment they need.
So What Can We Do To Eliminate TB Stigma?
On a national level, State-led welfare activities and efforts to eliminate or reduce poverty could improve living conditions for the poor, and make the living situation less conducive to the spread of TB.
The State, or NGOs would also need to step in and spread awareness about the realities of tuberculosis, and dispel many of the myths surrounding its spread.
On a personal level, we can all help by understanding how TB spreads and educating others about the same.
Tuberculosis doesn't spread through:
physical contact
sharing drinks or food
coming into contact with bed linen or toilet seats
kissing or sexual contact
According to the Centers for Disease Control (CDC) Mycobacterium Tuberculosis bacteria spreads from one person to another through air. It enters air when a person with TB of the throat or lungs coughs, speaks, or sings. Others who breathe in the bacteria may become infected.
However, tuberculosis of the spine or kidney can't be transmitted this way.
Understanding these points and spreading awareness contributes to removing some of the stigma tied to TB. It's a small step, but many of these together, make a large, VISIBLE, impact.
(At The Quint, we question everything. Play an active role in shaping our journalism by becoming a member today.)