It's a hot, brooding rainy afternoon in Mumbai as many of us TB nerds congregate in a small meeting room in a hotel in Mumbai. The room is filled with TB experts, doctors and government officials and our conversation is predictably dull. We talk about diagnosis, treatment and drugs.
But the room comes alive as India's most famous TB patient Amitabh Bachchan walks in with legendary business leader Ratan Tata. Both of them are now "ambassadors" for TB control. Titled the Mumbai Dialogue: Towards a TB Free India, this is an event to engage some of India's leading corporations to invest in TB.
I expected this event to be no different from many others before. There are the usual deferential introductions, but soon after the two ambassadors speak, which changes everything. Ratan Tata in his opening remarks speaks of the enormous economic burden of TB, of human suffering and of loss. He talks of his commitment to public awareness and supporting patients. He is reaching out to his peers in the best way possible to convince them to invest in TB.
"As Bachchan speaks about stigma, he is really a former patient talking to a room filled with people who know nothing of the patient experience."
Amitabh Bachchan recounts his own experiences as a TB patient. He talks of the time he was diagnosed and the disbelief that followed. How can I get TB? he had wondered then. This disbelief by India's most famous actor is possibly shared by millions of TB patients when first diagnosed. Most Indians believe that tuberculosis cannot happen to them, even though our country has the highest TB burden globally.
The experts in the room would likely have limited the discussion to diagnosis and treatment, but Tata and Bachchan highlight dimensions that have not been explored enough. As Bachchan speaks, I am reminded of countless conversations that I have had with patients who argue they need more than diagnosis and treatment. They need emotional and economic support, acceptance. Unfortunately government programs do not address these needs. In addition, public awareness about TB remains dismal and mired in stereotypes of poverty and deprivation.
This lack of understanding has two primary causes -- a string of ineffective public awareness campaigns and deep-seated stigma which has never been addressed.
Over decades, little effort has been made in creatively designing and developing TB awareness campaigns. Most are developed without the involvement of patients and grassroots workers who understand living with the disease better than doctors. As a result messaging is often stilted, over-medicalised and unengaging.
I recall the time when I worked with the Mumbai Administration to draft a letter to invite Mr Bachchan to be an ambassador for TB. At that time no one knew that he was a former TB patient. Even then there were many who believed that this was a wasteful exercise. They argued that money for more drugs and diagnostics was needed first. The doctors at this discussion too tried to focus only on diagnosis and treatment. The truth is they neither understand stigma nor address it.
TB-associated stigma is so deep-seated that most patients struggle to even accept the diagnosis ("I can't have TB"). The truth is that any of us, Amitabh Bachchan included, can get TB. But it's curable, it's preventable and it's not something to be ashamed of.
As Bachchan speaks about stigma, he is really a former patient talking to a room filled with people who know nothing of the patient experience. He may not realise it but by emphasising stigma, he is already speaking up for TB patients in a landscape where they are often disregarded.
If we want to address TB successfully, we have to break the silence around TB within our homes, our communities and our workplaces. Many doctors often tell patients to nor tell anyone about their disease as you they'll be cured in six to eight months. The patients internalise this and never want to talk about it again. While doctors they think they are looking out for the patient they are instead beginning a process of shame.
TB is airborne but once patients are diagnosed and started in a treatment programme they are soon non-infectious. It's a hard enough disease to live with. We should not begin this battle with shame and guilt. Also the treatment for TB has a psychological aspect that is often ignored. The treatment can be difficult to take with horrible side effects. So when patients suffer, who do they talk to? "It's not an individual but a family that fights TB," Deepti Chavan an MDR TB survivor told me once.
"It's a hard enough disease to live with. We should not begin this battle with shame and guilt."
Patients suffer silently and sometimes give up treatment, in the process become drug resistant. As a result of TB-related stigma, patients are sometimes mistreated and even abandoned by families."Fighting TB is a mental battle not just physical one," Gyaneshwar a former MDR TB patient told me on my many visits to his Dharavi home. True. However, in a society where we don't know enough about TB, where can patients get the support to fight the disease?
It's clear that one of the most critical components of fighting TB in India will include awareness and educational programs that specifically focus on stigma reduction and patient empowerment. What does this mean?
Indian corporates, international agencies and the government need to invest in creating multi-layered campaigns that can address stigma within communities and the workplace. These campaigns must be developed in consultation with patients and communities. Also, all diagnosed patients and their families need to be provided support and counselling through programs. Additionally, on-ground community awareness programs must be implemented with local leaders, regional celebrities and patient advocates. We need an Amitabh Bachchan but we need many more voices of patients talking about their experiences of surviving TB.
The Mumbai Dialogue has begun a new conversation around TB. If we want to fight TB we have to sustain this conversation and ensure that it includes everyone.