Chennai-based homemaker Kirupavathi almost lost her friend Jamuna to tuberculosis. Delay in diagnosis delayed the initiation of treatment. By the time Jamuna, then in her mid-thirties, finally knew the reason behind her constant chest pain, two of her bones had already been eaten away by the disease.
Kirupa helped Jamuna, a single mother, at every stage of her treatment, personally ensuring she took her medication and had food regularly. When Jamuna was free of TB, they understood the importance of support and both friends decided to help others in their community. Now, 16 years later, they identify people with symptoms, and often personally accompany them to the hospital. They also play the role of treatment supporters (earlier known as DOT providers) to those diagnosed with tuberculosis.
This is not an isolated case. TB survivors and people close to them, the affected community, are spreading awareness going door-to door, referring people with symptoms to free treatment facilities and helping close the gaps in service delivery in India’s Revised National TB Control Programme (RNTCP).
Currently, 300 tuberculosis survivors are championing TB advocacy across six states—Assam, Bihar, Chhattisgarh, Jharkhand, Odisha and Uttar Pradesh. They are equipped with advocacy training under a mentorship programme organised by the Chennai-based NGO REACH. The stories of the survivors echo at every roundtable and workshop, and through their lived experience, they educate and inspire others.
This growing community response to the disease is part of a worldwide movement where the affected communities play an active role in TB response. From diagnostics to service delivery, and from advocacy to patient rights, tuberculosis survivors are making their presence felt at every step, paving the path for others to lead a healthy and discrimination-free life.
Earlier, the role of patients in response to a disease, which has remained the number one infectious killer over the last 200 years, was limited to receiving treatment and bearing the side-effects, while tackling stigma and discrimination from people around them alone. On the other hand, the policy-level decisions that affected them were taken by government officials with technical inputs from doctors and healthcare staff.
But this changed when people like Nandita Venkatesan initiated their advocacy efforts. The Mumbai-based journalist and TB survivor lost her hearing due to a side-effect of a drug used in MDR-TB treatment. Today, she is taking on a pharmacy giant to prevent the extension of a patent on another drug used to treat MDR-TB, advocates vociferously on patient and disability rights and has
also been appointed to the WHO Civil Society Task Force on TB.
That the affected community is a resource is now increasingly being recognised by the healthcare community across the world. Nandita’s story paves the way for other survivors to participate in decisions that affect them.
People living with HIV have led the way by advocating for their rights. In the 2016 United Nations Political Declaration on Ending AIDS, member states affirmed the critical role of communities in advocacy, participation in the coordination of AIDS responses and service delivery. A UNAIDS document states that response from the affected community can help “achieve improved health outcomes, mobilise demand for services, reach people with services difficult to reach with formal health
systems, support health systems strengthening, mobilise political leadership, change social attitudes and norms, and create an enabling environment that promotes equal access.”
The implementation of the HIV/AIDS Act 2017 by the Centre is a living example of the power of the affected community’s response. An offshoot of this response has also had implications on the rights of the LGBT community. Handbooks and guidelines penned by the affected community later translated to bills and rights, because they were given the platform to speak up, and their concerns were heard and addressed.
With more than a third of TB cases not being diagnosed or treated, the disease has led to the death of 1.6 million people globally in 2017. According to data from the Lancet Commission on TB, 65 per cent of the mortality occurs in high-burden countries such as India, where nearly 1,400 deaths are caused by tuberculosis every day.
A resolution brought out after a UN high-level meeting on tuberculosis in September 2018 provided comprehensive analysis and specific recommendations on how high-burden TB countries like India could target their investments in future to ensure an end to the disease. One of the four recommendations was to create a new era of shared responsibility. And for that to happen, apart from establishing greater accountability at all levels, ensuring that tuberculosis survivors and their advocates have an opportunity to raise inconvenient truths and demand action was also recommended.
For a high-burden country like India, it’s not too early and neither is it too late to create an enabling environment to engage the affected community in the TB response. The time is now—patients’ voices must be heard and their inputs included if we are to see the end of tuberculosis in our lifetimes.
Former journalist and currently a media associate at REACH, a Chennai-based NGO working towards a tuberculosis-free India