The disease of tuberculosis is widespread and impacts millions of individuals across the world. India has the highest burden of tuberculosis, and it is the most infectious killer. In 2020, as per the data provided by the Union Health Ministry in Lok Sabha, India reported 1.8 million TB cases. The issue of TB has only been made more challenging with the COVID-19 pandemic and subsequent lockdowns, as there was a negative impact on detection of cases, diagnosis and treatment. The pandemic has also led to a reversal of decades of progress in the TB elimination. With the vision for ‘TB-Mukt Bharat’ set forth by the Honorable Prime Minister of India, Shri Narendra Modi, it is essential that we build political will and prioritize efforts to address the disease. Policymakers and political leaders from all levels, national, state, district, will need to come together to realize the vision.
One of the most significant challenges affecting the treatment of tuberculosis is stigma. The most common reasons for stigma are the perceived risk of transmission to members of the family or community, lack of awareness about the disease and its prevention, misinformation and myths propagated in the society, among numerous others. The India TB Report 2019 finds that the fear of discrimination leads to many individuals, especially the most vulnerable and marginalized, stopping treatment and medication well in advance, which often leads to relapse. The stigma is worse for women who are more likely to face discrimination and rejection from their families, friends, workplaces and communities and get blamed for contracting the disease. Thus, it is vital that policymakers adapt TB control measures to address issues like societal stigma and discrimination faced by individuals and, while doing so, take socio-economic factors like gender and economic standing into account.
To guide the work done by policymakers on the ground, policies or laws determine the course of action. In the case of tuberculosis, there is the National Strategic Plan 2017 – 2025 which provides a set of goals like population screening through outreach, high standard of care in the private sector through comprehensive engagement. The requirements are arranged in four strategic areas of Detect, Treat, Prevent & Build to ensure proper treatment. Another policy that guides action on the issue is the National Framework for a Gender-Responsive Approach to TB in India, which determines the differential impact of the disease on the basis of gender and how the stigma and discrimination affect women in a worse manner, even though males are more susceptible to the disease.
To ensure a holistic response, along with developing and adapting policies to real-time changes, we must introduce inclusive and person-centred, stigma-free, need-based psychosocial interventions along with clinical interventions to reach all parts of the society, especially for those who need it the most, and address the stigma that increases the rate of infection, leads to diagnostic delay and treatment noncompliance.
Policymakers play a critical role in changing the attitudes of individuals as they are well respected within the community and are considered sources of information from the official authorities. Therefore, they become key to building enhanced care strategies. They hold the ability to motivate individuals and inform them regarding the various schemes and services offered by the government so that these are availed widely. In the case of tuberculosis, there is the Directly Observed Treatment Short-course (DOTS) program, where healthcare workers monitor individuals taking over-the-counter medication. It also becomes crucial to use communication strategies to share regular updates about the disease, its prevention and treatment through mediums like radio networks, television, and other common sources that people use daily to obtain information. Further, considering their experience in the community, the policymakers also can address challenges like stigma and discrimination by leading outreach activities to address misinformation. This can be done by building champion voices out of stories shared by TB-affected patients and families – talking about their struggles and successes, so others understand that the disease is preventable and are encouraged to complete their treatment.
Personally, as a member of parliament, I have actively engaged with vulnerable communities and populations on-ground to understand the difficulties they face. I am also on the advisory board for Global Coalition Against Tuberculosis (GCAT). GCAT aims to bring together parliamentarians, policymakers and civil society representatives to discuss the challenges of TB prevention and control in India and raise awareness on the need for improved TB control and formulate key recommendations.
Bhubaneswar Kalita, Member of Parliament
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